Events

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Are you passionate about making a real impact in the lives of those affected by pemphigus and pemphigoid? The IPPF is looking for dedicated volunteers to help, support, educate, and advocate for our community. Whether you have a few hours a month or want to take on a larger role, there’s a place for YOU!

Why Volunteer?

  • Empower others with pemphigus/pemphigoid and families.
  • Connect with an inspiring community.
  • Gain valuable experience in advocacy and support.
  • Make a life-changing impact for those living with a rare disease.

Volunteering with the IPPF offers the chance to make a life-changing impact. Your time and efforts contribute to a movement of support, advocacy, and education, directly transforming the lives of those affected by pemphigus and pemphigoid. Every contribution, no matter how small, helps us create a world where no one faces these challenges alone. Join us in making a difference today.

Ways to get involved:

  • Volunteer as a Peer Coach or Mentor
  • Share your story at a patient event or  write for an IPPF publication
  • Raise awareness on Rare Disease Day
  • Become a social media ambassador
  • Be a Fundraising Champion
  • Volunteer as  Community Advocate
Volunteer Today!

Next Time: “Know Your Triggers, Know Your Power”


By Becky Strong

There’s something that happens when you walk the halls of Congress and say, out loud,” I’m here because of the IPPF Community”. It’s equal parts nerve-wracking and clarifying. That’s exactly where I found myself this past May, representing the IPPF community at the 2026 Coalition of Skin Diseases Hill Day in Washington, D.C. This wasn’t my first time advocating on behalf of the pemphigus and pemphigoid (P/P) community, but every Hill Day reminds me of why this work matters and why it can’t stop. 

The Coalition of Skin Diseases (CSD) is a voluntary coalition of patient advocacy organizations working to improve the lives of the more than 84 million Americans living with a skin disease. The IPPF has been a long-time proud member of the CSD, and the Hill Day brings patients, caregivers, and patient advocates together to meet directly with members of Congress and their staff. This year, the event was May 18-20th at The Morrow Hotel in Washington, D.C. It was 2 days full of advocacy training, prominent speakers, a Congressional Briefing, networking with other advocates, story sharing, and face to face legislative meetings on Capitol Hill.  

The first day was all about preparation. Before any of us walked into a congressional office, we went through advocacy training together. We learned about the “ask”, how to frame our personal stories, how to connect them to specific policy “asks”, and how to have productive and focused conversations with legislators and their staff in the short time slot we are given. 

For those of us representing rare skin diseases, the framing is even more important. P/P are not household names. When I’m sitting across from a legislative aide, I have a few minutes to explain that these are serious, painful, life-altering and sometimes life-threatening autoimmune blistering diseases with no cures. At the same time, I need Congress to understand that the policies they make have a direct impact on whether we patients can access the care and treatments we desperately need. 

The training helped us all sharpen that message. We also heard from prominent speakers that work as staffers in Congressional offices, including Molly Burns, Legislative Assistant to Debbie Dingell, my own Representative.  We also had time to connect with fellow advocates from our state as well as those from across the country. I met people living and thriving with scleroderma, psoriasis, cutaneous lymphoma, hidradenitis suppurativa, and more. The CSD community and shared purpose is its own kind of fuel. 

The CSD’s 2026 advocacy priorities centered on limiting harmful insurance practices, including prior authorization, step therapy, and non-medical switching, that act as barriers to care. We also pushed for increased NIH funding for skin disease research, specifically through the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), where only a fraction of the budget currently goes toward skin disease despite the enormous number of Americans affected. And we called for money paid on a patient’s behalf through a rebate program or coupon card to be applied to our out of pocket maximums or co-pays since those have been paid with real dollars. 

Day two was Hill Day itself. Armed with our talking points, our stories and a clear set of legislative asks, 75 patients and advocates from 26 states fanned out across Capitol Hill for 105 legislative meetings with our federal representatives and their staff. I had the opportunity to meet with staff of Senator Elissa Slotkin (MI), Senator Gary Peters (MI), Representative Debbie Dingell (MI) and Representative Rashida Tlaib (MI). I brought the P/P community into each of those rooms with me. I talked about what it means to live with these diseases, the painful blisters, the emotional vulnerability and the disruption to “normal” work and family life. I talked about patients who’ve had to fight our insurance companies for access to treatments our doctors prescribed. And I made our asks clear. I left Washington having walked 18,000 steps on the Hill. I was tired, but I was hopeful, which honestly feels like the right combination for this kind of work. 

One of the highlights of Hill Day is always the Congressional Briefing – a formal session that draws staff from advocacy organizations, congressional offices, federal agencies, industry and sometimes academic institutions. This year’s briefing gave our coalition an opportunity to present the case for skin disease policy reform in front of a broad, engaged audience, including the Deputy Director of NIAMS, and Representative John Joyce, the only dermatologist in Congress. What struck me, as it always does, is how much education and policy change is still needed. Skin disease carries a significant and often invisible burden, not just physically, but financially and emotionally. Patients face insurance barriers at nearly every turn. Prior authorization delays can mean weeks if not months without access to critical medications. Step therapy protocols force patients to try treatments their doctors have already determined won’t work for them, or that patients have already tried without success. And research funding for skin diseases remains dramatically underfunded relative to the burden these conditions place on patients and their families. For our community, specifically, those stakes are high. P/P can be life-threatening. They are chronic. They require specialized and on-going care. And they are rare enough that many legislators, and even some healthcare providers, have never encountered them. 

Legislative changes are slow. It doesn’t happen from one meeting or one Hill Day. But it also doesn’t happen without them. I heard advocacy once described as a waltz, not a jitterbug. It will be slow, it will not seem like you are making progress, but forward movement is being made with every step and one day, the mission will be accomplished. Every advocate who walks into their congressional office and puts a human face on a disease makes it a little harder for that legislator to ignore. Every story shared, every policy ask make, every follow-up email sent will add up. I am grateful to the Coalition of Skin Diseases for making this event possible, including providing travel support so that patient advocates, who might not otherwise be able to attend, can have their voices heard.

And I’m grateful to every single person in our P/P community who has shared their story with me, trusted me to carry it to Washington, and continues to fight for a better path forward. If you ever thought about advocacy work and wondered whether you could do it, YOU CAN! You don’t need a policy background. You need your story, and your story is powerful. Our community deserves to be heard. And I’ll keep showing up until Congress hears us and helps us. 

Receiving a diagnosis of pemphigus or pemphigoid (P/P) can feel overwhelming, and it’s natural to search for meaning in a journey that may seem uncertain at first. While these conditions bring their own challenges, they can also be an opportunity for growth, resilience, and connection. In this post, we’ll explore how patients and caregivers can find a sense of purpose and strength in their experience, discovering new ways to live fully while navigating the ups and downs of life with (P/P).

Reflective practices:

You may be changed, but you are not broken.

Next Time: “Be the Help You Once Needed: Volunteer with the IPPF

Traveling with a rare disease isn’t always simple but it is possible. Whether you’re heading out for a much-needed vacation, visiting loved ones, or attending a conference, the desire to explore and connect with the world doesn’t go away with a diagnosis. In fact, for many living with pemphigus and pemphigoid, travel can be a powerful reminder that life is still full of opportunities, discovery, and joy.

Still, we know the logistics can feel overwhelming – managing medications, preparing for the unexpected, and wondering if your body will cooperate. That’s why we’ve created this list: to offer practical tips, encouragement, and tools to help you travel with greater confidence and peace of mind. Because you deserve to experience new places and meaningful moments without having to leave your health and comfort behind.

Helpful hints collected from the IPPF community:

  • Bring all your meds + extras in your carry-on
  • Bring a list of your current meds, dosages, and emergency contacts.
  • Keep medications in their original labeled containers and pack them in your carry-on, not checked luggage.
  • Call hotels ahead about accessibility and comfort needs
  • Get medical clearance and any necessary documentation
  • Ask your doctor for a letter explaining your condition, medications, and treatment needs (especially important for security or customs).
  • Check if your insurance covers you while away
  • If traveling internationally, consider travel medical insurance
  • Identify nearby clinics, pharmacies, and hospitals at your destination
  • Build in downtime and don’t overpack your itinerary
  • Plan travel during your best time of day (e.g., mornings if fatigue worsens later)
  • Bring comfort items (e.g., neck pillow, compression socks, heating pad)
  • Pack snacks and water, especially if you need to avoid certain foods.
  • Stay hydrated & eat regularly
  • On planes or long drives, stretch or walk when possible to prevent stiffness or clots.
  • Don’t be afraid to ask for help – use priority boarding, mobility assistance, or hotel accessibility options if needed
  • Listen to your body

Remember: pemphigus or pemphigoid is part of your story, but it doesn’t define your experiences. Be kind to yourself, build in flexibility, and don’t hesitate to ask for help when you need it. Most importantly, give yourself permission to find joy in the adventure – your way, at your pace.

Next Time: “Managing the Costs of Care”

If you are in a crisis or need immediate support, please don’t wait.
Call or text the 988 Suicide & Crisis Lifeline at 988—available 24/7, free and confidential.

If you or someone you know is in immediate danger, please call 911 or go to the nearest emergency room.

Living with pemphigus or pemphigoid can be isolating, especially when symptoms like pain, fatigue, or visible flares make it hard to socialize or keep up with your usual routine. It’s understandable if you’ve pulled back from friends, family, or activities you once enjoyed.

But connection matters. Whether it’s a quick text, a virtual chat, or a heartfelt conversation with someone who truly gets it, staying connected – even in small ways – can have a big impact on your emotional well-being.

In this message, we’ll share a few simple ways to maintain and rebuild meaningful connections, even on the hardest days. Because you are not alone and you deserve support that makes you feel seen, heard, and valued.

Ways to stay connected:

  • Be Honest About How You’re Feeling – Let your loved ones know when you’re having a tough day. A simple “I’m not up for a long talk, but I’d love a quick check-in” keeps the lines of communication open without adding pressure.
  • Use Technology to Stay Close – Video chats, voice messages, and even group texts can help you feel involved when going out isn’t possible. Virtual support groups can also connect you with others who understand life with pemphigus or pemphigoid.
  • Pace Yourself Socially – It’s okay to say no when your body needs rest. Prioritize the connections that feel meaningful and energizing rather than draining. Even short, positive interactions can make a big difference.
  • Lean on Peer Support – Talking with someone who has walked a similar path can ease loneliness and help you feel seen. IPPF’s Peer Coach Program or support groups offer safe spaces to share and learn from others.
  • Reconnect in Small, Low-Energy Ways – Send a card, share a favorite memory, or comment on a friend’s post.These small acts keep you engaged and help others know you still care, even if you’re not always able to show up in big ways.

You don’t have to go through this alone. Here are some resources to find additional information and support:

  • Mental Health America – Living with Chronic Illness: mhanational.org/chronic-illness
    • Offers information on how chronic health conditions affect mental health and provides tools for coping with anxiety, depression, and stress
  • National Alliance on Mental Illness (NAMI): nami.org
    • Find free support groups, education, and a helpline for people managing mental health challenges—including those with chronic or rare diseases.
  • Psychology Today – Find a Therapist: psychologytoday.com/us/therapists
    • Use your zip code to search for therapists experienced in chronic illness, trauma, anxiety, or grief. Many offer telehealth appointments.
  • Rare Disease Mental Health Resource Hub – NORD: rarediseases.org/mental-health
    • A hub created specifically for rare disease patients and caregivers, with articles, webinars, and personal stories focused on mental and emotional well-being.

Next Time: “Travel Tips for People with Pemphigus or Pemphigoid”

If you are in a crisis or need immediate support, please don’t wait.
Call or text the 988 Suicide & Crisis Lifeline at 988—available 24/7, free and confidential.

If you or someone you know is in immediate danger, please call 911 or go to the nearest emergency room.

Living with a rare disease can bring a unique set of challenges, many of which extend far beyond the physical symptoms. The uncertainty, isolation, and stress that often come with a rare diagnosis can take a real toll on your mental and emotional well-being. It’s okay to acknowledge that this journey is hard. It’s even more important to know that you don’t have to face it alone.

Whether you’ve been recently diagnosed or have been navigating life with a rare disease for years, your mental health matters. In this message, we want to share resources, tips, and support to help you care for your mind as well as your body.

Start here:

  • Acknowledge your emotions without judgment – It’s normal to feel overwhelmed, anxious, or frustrated. Allow yourself to process those emotions without judgment. Mental health starts with self-compassion
  • Talk to a therapist or mental health professional: Therapists familiar with chronic illness or rare disease can help you manage anxiety, grief, or depression related to your diagnosis. You don’t have to wait for a crisis to reach out.
  • Build a support network – Connect with people who understand, family, friends, healthcare professioinals, or whether it’s through a rare disease support group, a peer mentor, or an online community. Shared experiences can ease isolation and help you feel seen.
  • Track your emotional well-being – Just like you might track symptoms or medications, journaling or using a mood-tracking app can help you spot emotional patterns, triggers, or progress over time.
  •  Practice self-compassion daily – create space for rest and joy – Even during flares or uncertainty, finding small moments for things that bring you comfort – whether that’s music, nature, creativity, or mindfulness – can build emotional resilience.
  • Advocate for yourself – Feeling dismissed or misunderstood by others, including doctors, can harm your mental health. Practice communicating your needs clearly and consider bringing an advocate with you to appointments.

You’re not “too emotional.” You’re navigating something incredibly hard. And you’re doing it with courage. Consider attending an IPPF Event

Here are some resources to find additional information and support:

  • Mental Health America – Living with Chronic Illness: mhanational.org/chronic-illness
    • Offers information on how chronic health conditions affect mental health and provides tools for coping with anxiety, depression, and stress
  • National Alliance on Mental Illness (NAMI): nami.org
    • Find free support groups, education, and a helpline for people managing mental health challenges—including those with chronic or rare diseases.
  • Psychology Today – Find a Therapist: psychologytoday.com/us/therapists
    • Use your zip code to search for therapists experienced in chronic illness, trauma, anxiety, or grief. Many offer telehealth appointments.
  • Rare Disease Mental Health Resource Hub – NORD: rarediseases.org/mental-health
    • A hub created specifically for rare disease patients and caregivers, with articles, webinars, and personal stories focused on mental and emotional well-being.

Next Time: “Staying Connected, Even When It’s Hard”

Living with pemphigus and pemphigoid comes with many challenges – some visible, and others deeply personal. One area that can be especially difficult to talk about is how our diseases affect intimacy and close relationships. You’re not alone in facing these concerns, and it’s important to know that.

This message is meant to open the door to an honest, supportive conversation about the ways pemphigus and pemphigoid can impact physical closeness, emotional connection, and self-confidence, and how to navigate those challenges with care, understanding, and the right tools.

What helps:

  • Open communication with your partner
  • Focusing on emotional closeness first
  • Time physical intimacy for the times of day you feel your best
  • Being patient with yourself and each other
  • Your worth and your capacity to love (and be loved) haven’t changed.

Links to intimacy websites you may find helpful:

Next Time: “You’re Not Alone: Mental Health with a Rare Disease”


Caring for others while managing a rare disease can feel overwhelming. You want to be there for your loved ones, but your energy is limited. When both caring for someone and being the person receiving care, effective communication and a clear understanding of roles and needs are crucial.

Gentle strategies:

  • Open communication is essential
  • Prioritize self-care
  • Let go of perfection
  • Respect each other’s boundaries
  • Ask for help from your support network
  • Explain your condition to your kids in simple, reassuring terms
  • You’re still a great caregiver. You’re showing your loved one resilience in action.

Caregiver Resources

“Your Relationships Matter: Let’s Talk About Intimacy”

Having pemphigus or pemphigoid can be a full-time job. Whether you’re working full-time, part-time, or from home, pemphigus or pemphigoid can make staying productive difficult. And doctor appointments, infusions and medication schedules can be hard to adhere to when you have a job. Navigating a chronic illness like pemphigus and pemphigoid  while maintaining a productive work life can be challenging, but it is achievable with the right strategies. 

Ideas for support:

  • Open a dialog with your management or HR about possible accommodations
  • Consider using short-term disability or Family and Medical Leave (FMLA)
  • Use reminders and planning tools to manage brain fog
  • Schedule demanding tasks during your “best” time of day
  • Your value isn’t measured by how much you do. It’s in who you are.

Be sure to check with your state to see if they have programs that can help get you support quickly, like FMLA and ADA. Use these links to learn more about ADA rights and accommodations. Some additional resources are listed below:

Next Time: “When You’re the Caregiver and a Patient”

Disrupted sleep is common with chronic illness, especially with pemphigus and pemphigoid. Between discomfort, itching, or medication side effects, you might struggle to rest well. We’ve collected a few tips from the community to share with you.

Try this:

  • Keep a cool, dark, quiet sleep space
  • Avoid heavy meals before bedtime
  • Try to spend time outside and be active if possible
  • Stick to a wind-down routine (same time each night)
  • Ask your provider about meds that disrupt or aid sleep
  • The doctor may have prescription medications that can help for pain
  • Take prednisone in the morning

Rest isn’t lazy. It’s essential. You are doing enough.

Additional Resources

The Better Sleep Council: https://bettersleep.org/

NIH Healthy Sleep Habits: https://www.nhlbi.nih.gov/health/sleep-deprivation/healthy-sleep-habits

American Academy of Sleep Medicine: https://aasm.org/wp-content/uploads/2021/05/Prioritizing-Sleep-and-Managing-Fatigue.pdf

 Bedtime Calculator: https://sleepeducation.org/healthy-sleep/bedtime-calculator/

Healthy Sleep Habits: https://sleepeducation.org/healthy-sleep/healthy-sleep-habits/

Healthy Sleep: https://sleepeducation.org/healthy-sleep/

CDC Sleep: https://www.cdc.gov/sleep/

Next Time: “Managing Work When You’re Managing a Disease”

When pemphigus or pemphigoid affects your mouth or throat, something as simple as eating can become a painful and frustrating experience. Blisters and raw areas in the mouth, on the tongue, or down the throat can make chewing and swallowing difficult. But eating shouldn’t feel like a battle – you deserve to nourish your body in a way that supports healing and brings comfort. Good nutrition is essential for wound healing, maintaining energy, supporting your immune system, and managing the side effects of medications like corticosteroids or immunosuppressants. But when oral or throat involvement limits what you can eat, meeting your nutritional needs can be a challenge.

A Registered Dietitian (RD) is a licensed healthcare professional trained to help you make food choices that support your health. An RD can work with you to identify soft, ntrient-rich foods that won’t irritate your mouth or throat. They can help you create a meal plan that meets your protein, vitamin, and calorie needs and even recommend strategies to maintain weight and muscle mass if you’re losing weight unintentionally.

Try these foods:

  • Smoothies
  • Mashed sweet potatoes
  • Scrambled eggs
  • Yogurt (non-acidic)
  • Soup
  • Cooked vegetables

Keeping a food journal can help you identify patterns – what foods feel soothing, which ones make symptoms worse, and how your body responds. Write down what you eat (or take a picture of your plate before eating on your mobile device), how your mouth or throat feels afterward, and any flare-ups or improvements you notice. This record can help both you and your medical team adjust your diet for comfort and healing. Every small choice adds up to better healing. If you feel it would be helpful for you, download the IPPF Food tracker.

Next Time: “Rest is Healing: Tips for Better Sleep“

Self Care

Living with pemphigus or pemphigoid means getting to know your body in a new way. These are rare, chronic autoimmune diseases that affect the skin and mucous membranes, often making them feel fragile, painful, or unfamiliar. The symptoms may come and go in flares, and even the most routine tasks (like brushing your teeth or getting dressed) can suddenly feel overwhelming. It’s okay to grieve the changes you’re experiencing. Just as importantly, it’s okay to take extra time to care for yourself.

Here are some tips from the IPPF community, shared by those who live with pemphigus or pemphigoid and have learned to adapt with kindness and resilience:

  • Choose soft, tagless clothing made from natural or moisture-wicking fibers.
  • Avoid long hot showers; go for lukewarm and use gentle cleansers that are unscented and dye-free.
  • Pat your skin dry, in place of rubbing. Better yet, drip dry
  • Moisturize to protect your intact skin helps maintain the skin barrier and can reduce discomfort. Choose creams or ointments that are fragrance-free and formulated for sensitive skin
  • Use alternatives to tape to hold dressings in place such as cohesive bandages, gauze wrap, snug clothing, and tubular bands.
  • Consider non-stick pads to cover wounds
  • Wear hats and/or clothing made of SPF fabric
  • Rest when you need to
  • Brush your teeth with a toddler/child-size toothbrush
  • When mint/cinnamon toothpaste hurts, turn to children’s toothpaste
  • Stay hydrated – Drinking water throughout the day helps to keep your mouth moist and supports healing
  • Follow your medication regime and take your medicines on time

Remember: self-care is not selfish. Taking steps to reduce discomfort, support healing, and preserve your emotional well-being is essential for navigating life with a rare disease. You deserve comfort, every day. For additional information, visit our patient resources page.

Next Time: “Finding Foods that Work for You When You Have Oral Lesions“

April 28, 2025

Navigating life with pemphigus or pemphigoid (P/P) can be a challenging journey, filled with uncertainty and questions. Whether you’re newly diagnosed or have been living with these rare autoimmune diseases for years, one thing remains constant: Knowledge is power. Understanding your condition, treatment options, and the latest research can empower you to take control of your health and improve your quality of life.

P/P are complex diseases that affect each person differently. Symptoms, triggers, and treatment responses vary widely, making it essential for patients and caregivers to be well-informed. Learning about the disease can help patients recognize symptoms early, understand treatment options, and communicate effectively with their healthcare team.

For those newly diagnosed, the journey can be overwhelming. “I felt so alone when I was first diagnosed. I didn’t know what pemphigus was or how to manage it,” shared one patient. “Finding accurate information helped me understand my symptoms and gave me hope.” Education helps demystify these diseases, reducing anxiety and empowering patients to make informed decisions about their care.

Even for those who have been on this journey for a while, continuous learning is crucial. Research is constantly evolving, and new treatments are emerging. Staying informed about the latest advancements ensures that you are aware of all available options and can advocate for the best possible care.

One of the most effective tools for learning about P/P is the IPPF’s Patient Education Series (PES) webinars. They are designed to provide patients and caregivers with reliable, up-to-date information from leading experts in the field. They cover a wide range of topics, including disease mechanisms, treatment options, symptom management, and the latest research developments.

These webinars offer the unique opportunity to learn directly from dermatologists, immunologists, and researchers who specialize in P/P. Participants can ask questions and learn practical strategies for managing their condition.

“The PES webinars have been a game-changer for me,” shared a patient. “I’ve learned so much about treatment options and how to manage my symptoms. It feels empowering to understand my disease and know that I have a community of support.”

One of the most significant challenges for individuals with P/P is navigating treatment options. The webinars provide detailed explanations of available treatments, including corticosteroids, immunosuppressants, and newer biologic therapies. Understanding how these treatments work and their potential side effects allows patients to have informed conversations with their healthcare providers.

Additionally, the webinars highlight the latest research in the field. With ongoing studies on new therapies and a better understanding of disease mechanisms, staying informed ensures that patients are aware of cutting-edge treatment options.

Beyond education, PES webinars foster a sense of community. Living with a rare disease can be isolating, but these webinars allow patients to connect from around the world as we realize we have similar experiences, no matter where we live. Our experiences, challenges, and successes build a supportive network where people feel understood and less alone.

The IPPF is committed to supporting patients at every step of their journey. Our PES webinars are just one of the many resources designed to empower and educate the P/P community. By staying informed, you are not just learning about your disease—you are taking control of your health and building a stronger, more connected community.

To learn more about our upcoming webinars or to watch past recordings, visit the IPPF website. Together, we can face the challenges of P/P with knowledge, resilience, and hope.

You may be aware of the IPPF’s advocacy efforts. Now, we need you to advocate, too. Your story is important and shows that rare disease not only affects Americans, but Americans in your district. Your story proves to congressional members that their decisions have a great impact on human life and well-being. The IPPF encourages you to participate in bringing awareness of issues and legislation that affect the rare disease community to your state and federal representatives.

This may seem like a daunting process, but the IPPF is here to help. We have tools to support you as you prepare to speak with legislative members. One of the most important things to remember is that legislators are people, too. Look for common ground—they are parents, brothers, sisters, and friends. Statistically, they almost certainly know someone with a rare or autoimmune disease.

The following suggestions can help you to successfully become an advocate:

  • Contact the IPPF at advocacy@pemphigus.org to express interest in advocating at a local and/or national level. We can explain issues and legislation that the IPPF currently supports.
  • Identify your federal lawmakers by using the online tools at senate.gov (US Senate) and www.house.gov (US House of Representatives).
  • Monitor the congressional calendar. District work periods are the best time for lawmakers to meet with local constituents. Take advantage of the August recess. This is a busy time when many lawmakers hope to meet with their constituents to learn about issues affecting them and what they can do to help.
  • Schedule an appointment by sending a formal invitation to the lawmaker’s scheduler at least three to four weeks in advance of the proposed meeting date. Check your lawmaker’s website, as they may have a formal process for submitting meeting requests.

SAMPLE EMAIL TEMPLATE

Dear [Name],

I am writing to request a district meeting with (insert elected official here). As legislators increasingly play a role in shaping health care policy that impacts my access to quality and affordable care, I welcome the opportunity to discuss with you some of my challenges and opportunities patients face when caring for themselves.

I am available to meet with you on (suggest a few dates that work for you). If those dates do not work for you, I am happy to discuss other options with your staff. I can be reached at (insert phone number) or at (insert email).

Sincerely,

[Your Name]
[Your address]

About a week later follow up with a phone call.

PHONE CALL TALKING POINTS TEMPLATE

Hello, my name is [Your Name].

I’m a patient with pemphigus/pemphigoid in [Your City, State].

I’m following up on a written invitation I sent to [Name of Elected Official] wishing to speak with him/her to discuss issues facing patients like me when trying to obtain quality and affordable healthcare and prescriptions.

I would like to schedule an opportunity for [Name of Elected Official] to visit their office in the next three to four weeks. Do you have any availability?

(If they need time to check on the schedule, give them your name, email, and phone number. Be flexible. If they are unable to meet on the date(s) you suggested, discuss other options with them.)

Ask them if there is any required paperwork you need to submit prior to the meeting.

Thank you for your time, and I look forward to meeting [Name of Elected Official] at their district office.

THE VISIT:

  1. Understand the issues you are about to discuss. This is your story and it is important to use your experiences as compelling evidence of the issues at hand.
  2. Share your concerns with your elected official. If available, use the handouts that the IPPF provides on the policy or regulatory issue.
  3. Get to the point. Don’t take too long to make your pitch. Tell them who you are, the community you represent, the number of patients with our disease, what your primary concerns are, and how and why these concerns are related to a certain piece of legislation or regulatory requirement.
    • This should be conveyed in about 10 minutes.
    • If they ask a question and you are unsure of the answer, please say so and let them know you will find out and get back to them. The IPPF is happy to help you find the information.
  4. Double-check your facts and figures. Make sure that you are presenting accurate information.
  5. Thank your elected official for specific votes and efforts where they have supported legislation that helps our community.
  6. Take a photo with the elected official and their staff. Please share it with the IPPF. We love to post photos of our community participating in advocacy efforts.

Follow up by thanking your elected official for the visit.

THANK YOU NOTE TEMPLATE

Send by email or regular mail.

Dear [Name],

Thank you for taking the time to meet with me on [insert date].

As a constituent, I appreciate the opportunity to tell you about my disease and to share my story with you to see the impact healthcare policy has on patient access to care. It was an honor to meet you.

[Insert main points from the meeting as a way to reiterate your position.]

Please do not hesitate to contact me at [your phone or email address] if you have any further questions regarding [insert legislation or regulation name]. I welcome the opportunity to serve as a resource for you on these important issues.

Sincerely,

[Your Name]

​Follow up with IPPF staff. Share any action items resulting from the meeting with the IPPF advocacy team by phone or email.

We hope this helpful guide encourages you to get you involved in advocating for our community and for those who cannot advocate for themselves. We are always looking for new ways to advocate for the IPPF community and would appreciate any feedback.

The 2018 IPPF Patient Education Conference was held in Durham, NC from October 12-14, 2018. Our 2018 hosts were Donna Culton, MD, dermatologist and Assistant Professor at the University of North Carolina (UNC), and Ricardo Padilla, DDS, Associate Professor and Director of Maxillofacial Pathology Graduate Program at UNC. Dr. Padilla and Dr. Culton set a high bar for this conference. Guests stayed at the “Mansion on the Hill” DoubleTree by Hilton, Raleigh-Durham Airport at Research Triangle Park. Upon arrival, attendees were greeted by white rocking chairs, porch swings, and a sense of belonging. The hotel provided a relaxing and intimate environment for conference activities. The conference was an amazing opportunity for patients and their support systems to not only have direct access to IPPF staff, but also some of the leading minds who treat pemphigus and pemphigoid.

The conference kicked off with a special “Dental Day” at UNC School of Dentistry. Attendees were welcomed by UNC staff and students at the Chapel Hill campus. Dr. Padilla welcomed everyone and introduced me as the morning’s first speaker. I shared my journey with pemphigus vulgaris (PV) and encouraged everyone to find their voice and strength after being diagnosed with pemphigus or pemphigoid (P/P).

UNC dental hygienists Jennifer Brame, Elizabeth Kornegay, and Jennifer Harmon then spoke about oral hygiene and how to use different products when patients have oral lesions. Next, Dr. Katherine Ciarocca (UNC) and Dr. Padilla discussed the oral side effects of treatments used in P/P. After lunch, attendees were given the opportunity to have an oral cancer screening and a one-on-one dental examination that included self-care techniques. The afternoon also included a discussion panel with me and Dr. Si Om Lim (UNC).

Upon returning to the conference hotel, attendees were invited to a welcome reception on the veranda. It was a perfect ending to the first day of the conference.

After breakfast and receiving their conference gift bags, attendees began day two of the conference with IPPF Executive Director Marc Yale’s welcome and a video from Senator G.K. Butterfield, 1st District, NC, Rare Disease Congressional Caucus Co-Chair.

The first presentation of the day was Kenny Metcalf, a PV patient from California. Kenny shared his emotional journey that led to his career as an Elton John tribute artist. Attendees then had the opportunity to see Kenny perform later that evening during the IPPF Awards Dinner. Kenny’s story highlighted the struggles that many of us have experienced with P/P.

This year, the conference featured separate learning tracks for pemphigus and pemphigoid. This allowed attendees to focus on the information that was most relevant to them. Sessions were specific to each disease and provided excellent information. The pemphigoid session was moderated by Marc Yale and Dr. Padilla. Dr. Janet Fairley (University of Iowa) gave a great introduction to the disease. Dr. William Huang (Wake Forest University) then discussed topical treatments used in pemphigoid before Dr. Russell Hall (Duke University) covered steroids and immunosuppressants.

The pemphigus session was moderated by Dr. Culton and began with an overview of pemphigus by Dr. Grant Anhalt (Johns Hopkins). Dr. David Woodley (University of Southern California) then discussed topical treatments used in pemphigus, and Dr. Adela Rambi Cardones (Duke University) discussed steroids and immunosuppressants.

After a short break, attendees were treated to disease-specific uses of Rituxan® and intravenous immunoglobulin (IVIG) therapy in pemphigus or pemphigoid. Dr. Ron Feldman (Emory University) and Dr. Huang led the discussion on pemphigoid, while Dr. Anhalt and Dr. Culton led the discussion on pemphigus.

On Saturday afternoon, Dr. Luis Diaz (UNC) shared 40 years of research in his keynote address, “Lessons from Endemic Pemphigus Foliaceus.” Dr. Diaz has been involved with the IPPF from its inception. Though primarily based at UNC, Chapel Hill, he has also conducted pemphigus research in Brazil for over 30 years. His research has included disclosing the immunopathological mechanisms operating in PV and pemphigus foliaceus (PF). Dr. Diaz is a true gem in our community.

After the keynote, there was an oral care discussion panel with Dr. Padilla, Dr. David Sirois (NYU), Dr. Nancy Burkhart (Texas A&M), and Dr. Joel Laudenbach (Carolinas Center for Oral Health). Attendees then attended lectures on the genetics of pemphigus and pemphigoid by Dr. Animesh Sinha (University of Buffalo) and “Future Trials of Targeted Therapies in Pemphigus” with Dr. Hall and Dr. Fairley.

Later, Dr. Culton introduced Jeff Weisgerber, a PV patient from North Carolina who has participated in two different clinical trials. Jeff shared his experience with the hope of breaking down barriers relieving potential fears patients might have about study participation. Marc Yale then discussed the IPPF Natural History Study and the importance of patient participation. Dr. Brittney Schultz (University of Minnesota) followed Jeff by discussing quality of life issues with P/P. Kate Frantz, IPPF Awareness Director, held an on-the-spot Awareness Ambassador training before Genentech representatives Jocelyn Ashford, Esther Newman, Kristine Amor Surla, and Kenia Carrillo Perez gave a great overview of Genentech Access Solutions and what they can offer to patients with P/P.

Following the day’s sessions, attendees had just enough time to change before the evening’s program. During the cocktail hour many hoots, howls, and laughs were had at the photo booth. The evening’s main event was the IPPF Awards Dinner, where individuals were recognized for their extraordinary service to the IPPF community. The highlight of the evening was Kenny Metcalf performing as Elton John. When Kenny entered the room, it was as if Elton John from the 1970s had arrived. He sat down at the piano and spoke to the crowd in a British accent, played the piano, and sang. The entire room couldn’t help but swing to the music and sing along. Many of those in attendance showed off their best moves on the dance floor. After a long day of learning, it was the perfect way for attendees to relax with new friends.

Marc Yale opened Sunday by introducing an extraordinary patient with PV, Porter Stevens. Porter shared his patient journey and how it propelled him to use social media to create his legacy and use it as a way to reach others with our diseases. Dr. Annette Czernik (Mt. Sinai Hospital, NY) and New York/Tri-State Support Group Leader Esther Nelson then shared an open discussion about the importance of being an informed patient and the doctor-patient relationship. The first morning session ended with a panel discussion led by IPPF Peer Health Coaches Mei Ling Moore, Rudy Soto, and Janet Segall.

After a quick break, attendees had the choice to attend a variety of workshops throughout the morning. These included “Infections in Pemphigus and Pemphigoid” with Dr. Cardones; “Ocular Disease” with Dr. Julie Skaggs (UNC Chapel Hill); “Drug Development” with Dr. David Rubenstein (UNC Chapel Hill); “Oral Care & Maintenance” with Dr. Nancy Burkhart; “Nutrition” with Kelly Calabrese (PV Patient, Optimal Wellness Solutions); “Women’s Health Issues with P/P” with Dr. Alexis Dieter (UNC Chapel Hill); “North Carolina Rare Disease Advisory Council” with Sharon King (North Carolina Rare Disease Advisory Council) and Tara J. Britt (Associate Chair, Rare Disease Advisory Institute, UNC School of Medicine); “Stress Management” with Mei Ling Moore (IPPF); “Mental Health Issues” with Lynne Mitchell (MES, MEd, RSW, Toronto, Canada); “Wound Care” with Dr. David Woodley; “Men’s Issues with Pemphigoid Disease” with Dr. Ron Feldman; and “Caregiving” with Janet Segall (IPPF).

After the morning sessions, Marc Yale gave his closing remarks.

As the conference ended, it was time to say goodbye to old and new friends. Many new support connections were made, and it truly is a blessing to be part of such an amazing event. The openness of doctors and healthcare providers really gave patients and caregivers access to some of the greatest minds studying these diseases. While we only had a brief time together, it felt like the relationships created will last a lifetime—there is something about talking with somebody “who just gets it.” We hope everyone that attended the conference carries the positive messages with them and knows that we’re all in this together.

Having a rare autoimmune disease is scary. Once you receive a diagnosis by a dermatologist experienced in treating pemphigus, it’s advisable to have all of your doctors communicate with your dermatologist (Internist, OB-GYN, Dentist, Orthopedist, and other specialists). Each healthcare provider must be aware of your complete health history and all medications that you take, including over-the-counter medications, vitamins, and supplements.

Because pemphigus is a skin-blistering disease, any invasive surgery may have repercussions. Accidents such as getting a paper cut, falling off of a bike, or tearing skin on the knee may also be problematic. Needing to have surgery when you have an autoimmune disease is even more of a challenge, especially if you need to have an implant. Open and clear communication is an extremely important aspect to healthcare in general, but it’s even more important in cases with pemphigus and pemphigoid (P/P). Any surgery involves risk and is a personal decision to proceed on a case-by-case basis. Even if you’ve been in remission for more than a year, it’s advisable to discuss any surgeries with your dermatologist so that all precautions can be taken in coordination with your surgeon. Once you’ve made the decision and arranged an operation date, it’s important to discuss all medications that you’re taking with your surgeon and anesthesiologist. Usually they’re aware, but it’s better to have the conversation.

Joe, a patient in remission, has shared his journey with me regarding pemphigus foliaceus and surgery.

In October 2004, I was diagnosed with pemphigus foliaceus. I was scared and worried about what would happen to me. I got through the shock and got on with my life as best as I could. I was put on 80 mg of prednisone and 4500 mg of CellCept® a day. In May 2005, I had a heart attack and developed atrial fibrillation. We discussed getting a pacemaker with the doctor, but were concerned about putting something artificial in my body when my immune system was so compromised. Instead, I had an ablation.

In 2009, I was referred to Dr. Victoria Werth at the University of Pennsylvania by my local dermatologist. She prescribed my first round of rituxan. I was finally able to taper off both the prednisone and CellCept®. I was in remission until 2011, when I underwent another round of rituxan. Other than the occasional sore in my mouth, I did well. I did have a tiny bit of activity on my skin, but clobetasol kept it in check.

In 2014 both my knees needed to be replaced due to the stress of normal living and physical work. I had my left knee replaced in January 2015, and the recovery went well. In January 2016, I had the right knee replaced. Within three or four days of my surgery I started getting small blisters around the incision site. For awhile I tried to keep it under control with the clobetasol. When I realized I was losing the battle, I called Dr. Werth’s office for an appointment. They got me in within a week. Dr. Werth was surprised that I had been in remission almost five years, since the second set of rituxan infusions. She immediately put me on 40 mg of prednisone and sent a referral to Dr. Donald Tsai at the Abramson Cancer Center at Penn to arrange for a round of rituxan. The following week, I met with Dr. Tsai, and less than a week later, I had my first infusion. I gradually decreased the prednisone, and I am again in remission. I would say to anyone who needs a joint replacement to go ahead and do it, but always consult with your doctor and dermatologist. Thank you for reading my story, and good luck to you all.

The IPPF thanks Joe for sharing his experience. We hope that if you have to decide whether to have surgery in the future that you will take the precautionary steps. It’s important to ensure that the level of activity with your antibodies doesn’t become jeopardized, or if you’re in remission at the time, that there are no repercussions.

On Saturday, February 4th, the Mid-Atlantic Support Group held its first meeting in Stafford, VA, with 10 new members attending. This meeting was supported by Vicky Starr and Diplomat Pharmacy.

Carolyn Fota approached the IPPF last fall about starting a support group in her area. Her reason for wanting to start a support group was simple. “I feel so much was given to me through the IPPF — it’s the least that I can do. This illness that we share, although serious, doesn’t have to be so isolating, scary and painful especially with a wonderful organization like the IPPF.” 

Carolyn and Kevin Kruetner, a patient from her area, were the driving forces behind this meeting. They worked together with the IPPF to make sure this meeting would be a success and a way for them and other Washington, DC, area patients to come together to provide mutual support.

The IPPF is a great organization with highly trained and wonderful people who can help you and your family.

The group started their meeting over a lunch of pizza and pasta. Afterward, Vicky Starr, RN, from Diplomat gave an overview of the various medications, therapies, and treatment options used in treating PV, MMP, and BP. She also provided an update on insurance by state and where the (national) legislation was going as far as the rare disease community is concerned.

She also provided attendees with advice on being good self-advocates, strengthening communication skills, managing stress, and developing good relationships with care communities (dermatologists, internists, medical doctors, dentists, periodontics, IVIG care team, etc.).

She stressed the importance of being involved with the IPPF: “The IPPF is a great organization with highly trained and wonderful people who can help you and your family.” She highly recommended being involved with a support group and attending the yearly conference.

Vicky also took individual questions and spent time with participants who were relatively new to PV/MMP and BP. She did a great job making all feel at ease. No question was too small.

Attendee Mimi Levich agrees that this support group got off to a great start. “It was nice to meet everyone and share our stories and advice. Listening to Vicki Starr was especially exciting. She had some great suggestions and talked to us as equals, which is a rare for a medical professional.” 

The IPPF thanks Carolyn Fota and Kevin Kruetner for bringing this support group to life. The duo has already started to plan their next meeting. Please keep an eye on the IPPF events page for more support group meetings around the country.

The first Rare Disease Day was first launched in Europe by EURORDIS, The Voice of Rare Disease Patients in Europe, and its Council of National Alliances in 2008. The USA joined the cause in 2009. By 2016, Rare Disease Day has become a worldwide event with over 80 countries participating.

Rare Disease Day is a pretty cool thing for those of us with rare diseases. According to the National Organization for Rare Disorders (NORD):

“Rare diseases are not so rare: there are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children.

People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.

Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.”

This year’s global theme is research. It is our chance to give lawmakers, industry leaders, researchers, and healthcare professionals a glimpse of the impact a rare disease and its treatments may have. It is a local, national, and international awareness event.

Rare Disease Day is a day of unity for us patients. I can’t speak for you, but I felt very alone and isolated when I found out I had pemphigus vulgaris. Then I found community in the IPPF. It was very comforting to know there were others out there who had gone through what I was living through. Now imagine being with hundreds of others who have a variety of rare diseases. Like us, they are patients looking not only for effective treatments, but also cures. On Rare Disease Day, we are a united front advocating for increased funding for research. It’s a time of inclusion. A time for uniting as one. A time to make a difference.

It’s also a time to network with other patients and learn about their diseases, how those diseases affect them, and what their disease organizations do to support their needs. It’s a way to find out what we – as members of the IPPF – can do better to help and support all who are affected by rare diseases. It is a time to find community and strength in knowing that we are not alone in a search for better treatments and cures.

Rare Disease Day is a day to find strength and power in your weakness, your disease. You have the power to share your story. Your story has the power to impact the leaders of your city, state, and country. Your story can evoke changes in law, government, healthcare, and medical education.

I encourage you to look for opportunities where you can get involved. If no opportunity exists near you, you can create your own. You could share your story with co-workers or local government officials, organize a bake-sale and donate the proceeds to the IPPF, or organize a run/walk to raise awareness. The list of possibilities is endless. Just be sure to explain what pemphigus and pemphigoid are and refer people to the IPPF if they have questions.

To learn more about Rare Disease Day and Rare Disease Week events, visit http://www.rarediseaseday.org/ and http://rarediseaseday.us/.

Wow! The 2016 Patient Conference has already come and gone. It was an amazing experience for attendees and presenters alike. This year’s event focused on the importance of peer support and expert research, and there was a special emphasis on oral care. The conference was full of learning, laughs, and the formation of life-changing bonds.

The Hilton Garden Inn Downtown Austin is located close to some of the best food and entertainment in the city. Austin’s 6th Street has been a famous entertainment hub since the 1970s. It’s home to South By Southwest — Austin’s famous music and film festival — as well as the Pecan Street Festival, which attendees got to catch a bit of after the conference. The street itself is closed to vehicle traffic on Friday and Saturday nights and becomes a pedestrian paradise filled with lights, music, and bustling people.

Terry Rees, DDS, MSD, Director of the Stomatology Center at Texas A&M University College of Dentistry, and I started the conference by giving a joint continuing education presentation to local dentists and patient attendees on pemphigus and pemphigoid (P/P) and the reason why early diagnosis is so important. Dr. Rees covered the academic content of managing patient care, while I gave a personal testimony of my journey to obtain a diagnosis. Together, we presented the whole picture of diagnosing, treating, and living with an autoimmune blistering disease.

Thursday night’s Cocktail Hour, Awards Dinner, and Casino Night were all held at Eighteenth Over Austin — a beautiful venue with 180 degree views of the city skyline. Aimee Payne, MD, PhD, Associate Director of the Medical Scientist Training Program at the University of Pennsylvania, gave the keynote speech. This included an exciting glimpse into the potential breakthroughs of her current research. The IPPF Awards Dinner recognized many people who have worked hard, both in front of and behind the scenes, at the Foundation.

At Casino Night, patients, doctors, and researchers alike tried their hand at games of skill and luck to see who could gather the most chips by the end of the night. Marc Yale, IPPF Executive Director, served as MC, calling out the numbers of winning raffle tickets. Prizes included a Samsung Galaxy Tablet, FitBits®, Sonicare™ electric toothbrushes, Waterpik® flossers, and more!

Friday began with opening remarks from Dr. Rees and Marc Yale. Todd Kuh, IPPF Board Chairman, introduced the Board of Directors and staff.

Sergei Grando, MD, PhD, and a leading P/P expert from UC Irvine, gave a lecture on IVIG. Next, Victoria Werth, MD, Professor of Dermatology and Medicine at the University of Pennsylvania, and Member of the IPPF’s Medical Advisory Board, spoke of the treatments that are commonly used to treat our diseases. She covered why steroids and immunosuppressants work to treat P/P, as well as how they work. Dr. Werth also covered many of the side effects and complications that come with using such strong medications.

Kim Yancey, MD, Professor and Chair of the Department of Dermatology at the University of Texas Southwestern Medical Center in Dallas, covered the use of topical treatments in the care of patients with ocular, nasal, and oral disease involvement. He stressed the importance of regular checkups with eye doctors, dentists, and ENT doctors, as well as the role of dermatologists in managing lesions.

These lectures were followed by a Q&A session where patients and caregivers were given the chance to ask questions that were not answered in the lectures. Sessions like these give patients power over their diseases because they give them a chance to have an active dialog with experts.

After a short break, Animesh Sinha, MD, PhD, professor and dermatologist at SUNY Buffalo, gave a lecture on genetics. He explained certain genetic characteristics that most P/P patients share with one another and how blood samples collected at the IPPF’s Patient Conferences over the years have helped him in his research.

Dr. Rees participated in an oral care panel with Nancy Burkhart, RDH, EdD, adjunct associate professor at Texas A&M College of Dentistry and member of the IPPF Dental Advisory Council; Paul Edwards, MSc, DDS, FRCD(C), professor at Indiana University and member of the IPPF Awareness Committee and Dental Advisory Council; and Michaell Huber, DDS, professor at the University of Texas HSC San Antonio. This panel gave the patients a chance to ask questions that would help them improve their overall oral health. Topics covered included mouth rinses, brushing techniques, and the best kinds of toothbrushes for P/P patients.

After lunch, participants had the opportunity to choose from different breakout sessions.

The first group of sessions included topics as diverse as “below the belt” with A. Razzaque Ahmed, MD; clinical trials with Diana Chen, MD, MBA, FAAD; disease­-specific patient reported outcomes with Badri Rengarajan, MD; and ophthalmology with Dennis Kay, MD.

The next group included a sessions on insurance from BioFusion’s Dinesh Patel, IVIG from Dr. Ahmed, oral care from Dr. Rees and Dr. Burkhart, and Rituximab and next generation therapies from Dr. Payne.

The final breakout sessions featured Dr. Payne’s lecture, “Future Targeted Therapy of Pemphigus,” as well as ”Mindfulness Based & Positive Psychology with P/P” by Terry Wolinsky-McDonald, PhD; Dr. Ahmed’s “Pemphigoid Q&A”; and Dr. Sinha’s “Pemphigus Q&A.”

The day ended with Dr. Kay, Dr. Ahmed, Dr. Sinha, and Dr. Payne sitting for a Q&A session, followed by cocktails and cupcakes. Many attendees then made their way out to explore the best that downtown Austin had to offer.

Saturday was a day for patients by patients. The morning started with breakfast and another opportunity to bond with fellow patients. Camaraderie is so important with P/P. Our diseases can be isolating, and it was awesome to meet others who have walked the same path, many of whom are well on their way to remission.

Mei Ling Moore started the morning sessions with a guided meditation and de-stressing presentation, helping us all to be open to the day ahead.

Next, Valhalla Holeman led us through the emotional story of her son Laten’s struggle with pemphigus foliaceus. There were not many dry eyes during the presentation. Laten’s quiet strength — along with the support of his sister and brother, Myles and Coale, sitting next to him — was truly inspirational.

IPPF Peer Health Coaches Mei Ling Moore and Janet Segall, IPPF Board Member Dave Baron, and I led a patient-to-patient panel. There were so many good questions and comments, and it really seemed to bond our community more tightly together once again.

Roy Vongtama, MD, reinforced the mind-body connection in his lecture. He explained how we might not have control over the stressors in our lives, but we do have control over how they affect us. Dr. Vongtama then showed how posture, breathing, and meditation affect overall health.

IPPF Awareness Ambassador Coordinator Bryon Scott discussed the Awareness Ambassador program and simple ways we can all spread awareness in our networks and with our own dentist. Anyone interested in getting involved should email
ambassadors@pemphigus.org.

Marc Yale then spoke of the work he is doing to advocate at the state and federal level. Marc is a true gem to the foundation. He has lobbied for Rare Disease Day in California and has stormed Capitol Hill with the National Organization on Rare Disorders and the American Academy of Dermatology. Marc broke down barriers and empowered everybody in the room. He made us aware that we, as patients, have the power to change laws in this country. It was truly inspiring.

Todd Kuh then gave a lecture on his “Chasing Down Pemphigus” fundraiser. Todd shared the story of how he felt after being diagnosed with PV and how a single conversation inspired him to regain the active lifestyle he led before his diagnosis.

After Todd, it was my turn to present “The Power of You.” There was a time when I felt I had lost my voice to PV, the treatments, and the side-effects of the medication. But somebody told me that patients are the true experts because we live with the disease. That inspired me to find my voice again, and my presentation focused on the ways we can all be advocates and share our expertise.

After the final presentations, Dr. Rees and Marc gave their closing remarks and hopes for all P/P patients. Everybody was touched. After two days of intensive and inspiring lectures, attendees left feeling united. It felt like we mattered. Doctors cared about the plights of patients like us. Patients felt like they had renewed hope. Some reinforced old friendships from past conferences, while others forged new relationships. I’m looking forward to what the IPPF has to offer in 2017!

Hello all! Working for the IPPF has been something I have been interested in doing for about five years, since my pemphigus vulgaris finally got under control. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our community pulls together and rallies for each other; it’s amazing how we sincerely care about one another.

The position of Outreach Manager is new to me, as well as to the IPPF. This position was created to be a link between Patient Support and the Awareness Campaign. While these programs have different focuses, they are united by the common goals of education, early diagnosis, and promoting the best treatments for P/P patients.

As a result, half of my time will be spent supporting patients. If anybody touched by our diseases has a question, comment, or concern, I am their first point of contact. It is my responsibility to provide all who contact me with clear, precise information and resources. I will also be creating and revising material for print and online, as well as helping to facilitate local support groups, meetings, and patient education calls.

The other half of my job will be spent raising awareness of P/P in the medical community with the goal of reducing patient suffering and diagnostic delays. Currently, the Awareness Campaign focuses on dental outreach. I will be coordinating patient presentations at universities and looking to recruit, train, and supervise other patient speakers and volunteers. I will also take over coordinating exhibit booths at conferences for dentists and medical professionals. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.” It sounds like a lot of work — and it is — but I am up for the challenge! Because of my status as a PV patient and my past work in the healthcare field, I feel that I am qualified to work with both communities simultaneously. I promise to work tirelessly to promote quality of life for the members of our community, as well as in the dental, medical, and nursing communities.

I know I would not be where I am today if it weren’t for the IPPF community. So many of you provided me with support, compassion, and encouragement during one of the lowest periods of my life. I was young when I was diagnosed. I was scared and felt isolated. But my IPPF friends changed all of that. I want to do that for others. It is my goal to pass along what I’ve learned and use my knowledge to make a difference in the lives of P/P patients. And the IPPF has given me this wonderful opportunity to do so.

Please know you can contact me by email at becky@pemphigus.org or by phone at  (916) 992-1298 x105. I will work to get you the answers you need. I am here for you.

What are Pemphigus and Pemphigoid
Patients
Healthcare Professionals