ippf - IPPF

An interview between Dr. Brittney Schultz and Becky Strong, IPPF Outreach Director, was published by the Women’s Dermatological Society on June 27, 2022 and highlights the importance and value for physicians and patients in engagement with patient foundations. Becky Strong is a patient with pemphigus vulgaris. For Becky, her journey spanned 17 months, seven physician specialists, multiple encounters with her dentist, and several rounds of incorrect treatments and procedures before correctly being diagnosed with pemphigus vulgaris. She’s a registered nurse living in Michigan with her husband Tim and two children. Currently, Becky is the Outreach Director for the International Pemphigus & Pemphigoid Foundation (IPPF), a patient support organization. Becky is responsible for education and awareness related to medical and dental professionals, dental students, and patients at the IPPF. She also spends time advocating at the federal level for patients with rare diseases.

Brittney Schultz is a dermatologist at the University of Minnesota and cares for patients with autoimmune blistering diseases. She has been engaged in the International Pemphigus and Pemphigoid Foundation for several years. While in residency, she previously partnered with the IPPF and her faculty mentor Dr. Nicole Fett to study quality of life in patients with pemphigus. She was a speaker at the IPPF 2018 Annual Patient Conference and nominated for a Star Award for Patient Support. She frequently refers her patients to the IPPF and finds them invaluable in patient advocacy and research.

Becky, tell us about your experiences in joining the International Pemphigus and Pemphigoid Foundation (IPPF).

I joined the IPPF as a patient looking for information and shared experiences with others with pemphigus vulgaris (PV). It was amazing to have the opportunity to talk to somebody else who “just gets it” without explanation. My first annual patient meeting was amazing and I learned so much from the doctors who presented at the meeting as well as real world tips and tricks from other patients.

That meeting was the first time that I had ever met anybody else with PV or a sister disease, pemphigoid, let alone somebody else who could pronounce it. I sincerely thought I would be walking into a movie-like portrayal of World War I field hospitals – with people sitting around in bandages and moaning. Instead, I found a room of vibrant, kind and sincere people who looked like me and had “pemphi-what” too.

More importantly, it was at this patient meeting that I realized what a dynamic organization the IPPF really was. IPPF Annual Patient Education Meetings bring doctors, researchers, scientists, and patients together to learn about current disease treatments, research in the disease space and pipeline medications all at a digestible and easy to understand way with a lot of networking between patients and experts. I realized that my doctor was part of a larger community of physicians who cared for and about patients like me – who were doing research to better understand pemphigus and who also wanted to find better treatments that worked faster. My doctor worked at a major university medical teaching institution that worked with many other doctors and researchers on pemphigus and pemphigoid. Toward the end of the first day of the conference, a doctor said that he was the expert in treating this disease but we, the patients, were the experts in living with these conditions. He went on to say that physicians could learn a lot from their patients about what they experience with this disease. I went home and took those words to heart. I offered to speak to the students and residents that were with my doctors and let them know that I would be willing to share my experience and let them ask questions that they wouldn’t normally ask. My oral medicine specialist took me up on this offer and within a few months, I had the opportunity to share my own story at the university’s School of Dentistry Grand Rounds.

I asked the IPPF for information on their support services to share with the dental school since my own doctors weren’t aware of the IPPF. In exchange, I wrote an article for the Quarterly – the journal of the IPPF. This article would change my life, and I became the first Patient Educator who shared my journey with other dental schools. Eventually, I was asked to become the IPPF Outreach Manager and work full-time to provide support and education to the IPPF community. Currently, I am the Outreach Director.

Read the full interview here.

The following was published on May 25, 2022 in Practical Dermatology.

The Global Dermatology Coalition, a patient-led, multi-stakeholder group of organizations, has launched during the 75th World Health Assembly in Geneva. The Global Dermatology Coalition includes dermatology patient organizations, health care professionals (dermatologists and dermatology nurses), researchers, and industry.

“Collaborative action is needed to change the difficult reality faced by skin patients and for this reason we have established the Global Dermatology Coalition. Together, our organizations are actively working to improve patient outcomes globally,” says Marc Yale, Board President of the International Alliance of Dermatology Patient Organizations (also knowns as GlobalSkin) and Chair of the Global Dermatology Coalition Steering Committee. “This would mean improved access to the diagnosis, care, treatments and support they need, when they need it – no matter where they live in the world. The Coalition speaks as one voice because people living with dermatological diseases, their caregivers and their families deserve to live without stigma, for their diseases not to be minimized and to achieve a higher quality of life.”

Diseases of the skin, mucosa, nails and/or hair are a leading cause of global disease burden (GDB), affecting nearly 900 million people in the world at any time and are the fourth most frequent cause of human illness globally. Dermatologists diagnose and treat more than 3,000 different diseases, including atopic eczema, psoriasis, vitiligo, albinism, acne, alopecia and thousands of rare skin diseases. Dermatological diseases cause substantial pain, disfigurement, disability, and stigma while they also lead to serious comorbidities and significant psychological, social and financial burdens for patients and their families. Theses diseases can be inflammatory, infectious and malignant, and are among the most prevalent and disabling disorders, particularly in low resource countries.

Formed in 2022, the Global Dermatology Coalition will advocate to the World Health Organization and other decision makers globally to elevate the healthcare prioritization of dermatological diseases.

Read the press release here.

by Carolyn Fota
As many in our community know, 2021 was a very successful year for the IPPF. From record attendance at our Virtual Patient Education Conference to creating connections for researchers at our Scientific Symposium, we found continued opportunities to grow the impact of our organization. Years of awareness efforts culminated in offering a continuing education course with the American Dental Association. Our peer health coaches adapted to the ongoing pandemic and provided additional support to patients and caregivers. These are just a few highlights from a year with many to choose from.

What you may not know is that Kevin Mead, the IPPF’s Executive Director, stepped down at the end of 2021 to pursue other opportunities. Though Kevin’s time with the IPPF lasted only 15 months, his impact was immediate. Kevin successfully applied for and received several high-profile grants, streamlined operations, and managed a virtual staff and team of volunteers with a deft hand.

Upon Kevin’s departure, the IPPF Board of Directors evaluated the needs of the Foundation to determine how to best move forward in the coming years. The Board conducted an exhaustive search and selected a staff member who shows a deep understanding of the IPPF’s vision, mission, and a commitment to the needs of our community.

I am pleased to announce Patrick Dunn as our newest Executive Director. Patrick has been working for the IPPF since 2014 when he joined the staff as a health communications specialist. His role grew over the years, and he has most recently worked as the IPPF Communications and Marketing Director. “It’s a tremendous honor to serve pemphigus and pemphigoid patients and their caregivers, as well as the medical professionals who support them every day,” Patrick said. “I’m excited to work in this new capacity, especially knowing the talent that the rest of our staff brings to their jobs. The IPPF has never been stronger, and there are many initiatives in the works to make a brighter future for patients.”

Patrick Dunn will officially assume his new role as the IPPF Executive Director on February 28, 2022. We are all looking forward to this next chapter. Patrick can be reached directly by email or phone (916) 435-6751.

Carolyn Fota is the Chair of the IPPF Board of Director’s, IPPF peer health coach, and Mid-Atlantic Support Group Leader.

We are happy to report that the IPPF had another great year in 2021. The infographic below highlights key areas in which we continue to work for all people affected by pemphigus and pemphigoid.

Despite the ongoing challenges of a global pandemic, we are optimistic about the future as we grow our efforts in patient support, awareness, advocacy, and research. Thank you to everyone in our community for your support. Together, we can expand hope for all people affected by P/P. We’re looking forward to 2022!

IPPF 2021 Year in Review

The 2021 RareVoice Awards were held on December 15, 2021 by the EveryLife Foundation for Rare Diseases. The evening celebrated rare disease advocates who make their voices heard year-round to advance policies that benefit the rare disease community.

We’re so proud of Marc Yale for his nomination in the Federal Advocacy Patient/Organization category, which honors advocates or organizations that have worked to create and pass federal legislation. And we’re thrilled to share that Hannah Yale won the 2021 RareVoice award for State Advocacy by a Teenager, which honors teens who have advocated for state or federal legislation. Congratulations, Hannah!

Hannah has been an advocate for the EveryLife Foundation and the IPPF since 2017. She has attended Rare Disease Legislative Advocate’s (RDLA) Rare Disease Week on Capitol Hill annually since 2017, and she is also a member of the Young Adult Representatives of RDLA. In 2020, Hannah served on the Funding Committee for Living in the Light’s “I Stay Home for Rare” Emergency COVID-19 Relief Fund.

Hannah is living with Ehlers-Danlos Syndrome, although she began her rare disease advocacy to support her father, Marc, and her mother (who also has a rare disorder). Hannah is currently a student at St. Mary’s College of Maryland, where she is majoring in public policy and minoring in English and philosophy.

For more information about the event and to view the full list of award recipients, visit here.

About the EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

December 15, 2021
The IPPF is grateful to share that we have received a one-time, $50,000 grant from the Chan Zuckerberg Initiative in support of accelerating research and finding treatments and cures for pemphigus and pemphigoid.

Recently, the Chan Zuckerberg Initiative (CZI) announced $13 million in funding for 40 patient-led, rare disease advocacy organizations that are working alongside researchers and clinicians to accelerate research in their disease areas. These grants are part of CZI’s Rare As One (RAO) Project, aimed at supporting and lifting up the work that patient communities are doing to drive progress in the fight against rare diseases.

Rare disease is not rare. As many as 7,000 rare diseases affect 400 million people globally. The Rare As One Project is committed to uniting rare disease patient advocates in their quest for cures.

To read more about the funding and CZI’s Rare As One Project, visit https://chanzuckerberg.com/.

The IPPF Patient Education Conference is an event that the pemphigus and pemphigoid (P/P) community looks forward to each year. For the IPPF staff, it’s remarkable to see the joy and relief that patients feel when they meet with other patients and learn valuable information about their diseases. When we held our first virtual Patient Education Conference in 2020, our goal was to connect with patients despite the inability to be together in person. Immediately following that event, we started planning the 2021 conference that was held this past October. We knew that the planning process would require us to be flexible due to the COVID-19 pandemic, but we hoped that with vaccines on the horizon, we’d be able to hold an in-person event in 2021.

However, it became clear last spring that an in-person conference was unlikely due to ongoing COVID-19 case numbers and the uncertainty of travel guidelines. Nevertheless, the IPPF staff pored over the planning of another great virtual conference with the goal of connecting P/P patients, caregivers, and others affected by these diseases. Luckily, we had the resources and experience from planning a prior virtual conference, so we focused on the ways we could improve the 2021 Patient Education Conference.

I often talk to my two young children about silver linings, especially since the start of the COVID-19 pandemic. (Spending time at home together, FaceTiming more often with extended family, and Target drive-up are examples I often give to help ease the pain of events, school, and playdates getting cancelled.) One of the silver linings about the virtual conference is the ability to reach more attendees across the world. This year, we were able to reach even more conference attendees than last year, with 762 registered attendees from 46 countries.

The 2021 virtual conference started off with a welcome reception that also included regional support group breakout meetings. Since the start of the COVID-19 pandemic, finding creative ways to connect with each other has been imperative. At the start of the pandemic, IPPF support group leaders throughout the US have done an amazing job of hosting virtual meetings in order to maintain connections. Attendees at this year’s conference had the opportunity to gain more information about these support group meetings, as well as details about starting a group in their area.

The first day of the conference continued with Staci White’s remarkable story about her journey to diagnosis. Staci is an IPPF Board of Directors member, and her strength is inspiring. Friday’s agenda also included an introduction to P/P, a session on the mind-body connection, and a peer health coach panel discussion.

Day two began with sessions focused on oral care, topical treatments, and managing corticosteroids. Pemphigoid gestationis patient Ashton Brown then explained her harrowing experience with the disease and its effect on her health, pregnancy, and the delivery of her baby boy. Ashton reached out to the IPPF after going viral on TikTok about the condition. The day closed with a general Q&A panel hosted by Dr. Aimee Payne, Dr. Neil Korman, and Dr. Nasser Said-Al-Naief; a session on navigating insurance and Medicare; and an informative discussion on COVID-19 and P/P.

The final day of the conference kicked off with sessions on the role of immunosuppressants, rituximab/IVIg and next generation therapies, and research. IPPF Executive Director Kevin Mead discussed the impact of international support groups in the United Kingdom, France, Germany, and the exciting work Noel Mudibo is doing in Kenya. The final session of the conference focused on advocacy efforts, including recent legislative efforts and ways to get involved.

As an IPPF staff member who works primarily behind the scenes, I don’t often have the opportunity to see patients and physicians face-to-face. This year, more than ever, I was able to experience that connection and strength within our community. Having a rare disease is hard; no one understands that more than P/P patients. The willingness to help one another, even through a computer screen, will always be a silver lining I will remember from the COVID-19 pandemic. We can’t wait until we can all be together in person again, but until that day, the IPPF is here for you.

Anna Lane is the IPPF Communications and Marketing Manager. She lives in Denver, CO, with her family.

We’re excited to share that in November of 2021, the IPPF’s Marc Yale was named as President of the Board of Directors of GlobalSkin. Marc is the current IPPF Research and Advocacy Coordinator, and he was the IPPF Executive Director from 2016-2020.

Marc Yale was diagnosed in 2007 with cicatricial pemphigoid. Like others with a rare disease, he experienced delays in diagnosis and difficulty finding a knowledgeable physician.

Eventually, Marc lost the vision in his left eye. This inspired him to help others with the disease. In 2008, he joined the International Pemphigus & Pemphigoid Foundation (IPPF) as a peer health coach.

Since then, Marc has worked with people to improve their quality of life and encourages them to become self-advocates. In 2009, he helped develop the Pemphigus and Pemphigoid Comprehensive Disease Profile giving experts insight into the patient perspective. In 2016, he was asked by the IPPF leadership to become the executive director of the foundation.

Marc currently resides in Ventura, California with his wife Beth and daughter Hannah.

About GlobalSkin

The International Alliance of Dermatology Patient Organizations (IADPO)—also known as GlobalSkin—is a unique global alliance serving patient organizations to improve the lives of dermatology patients worldwide. Based in Canada, the nonprofit is focused on three pillars: research, advocacy, and support.

GlobalSkin envisions a world in which people living with dermatological diseases and skin traumas can easily access the care and treatment they need, when they need it, and can live without stigmatization, persecution or economic disadvantages due to their conditions.

GlobalSkin is working with 185 patient association members—located in 62 countries representing more than 50 disease areas—to improve the lives of those affected by dermatological conditions throughout the world by:

initiating dialogue and advocating for access to new and existing treatments, and dermatological care to improve patients’ quality of life;
raising the awareness of the incidence of, and the challenges for, people living with serious dermatological diseases to create better understanding; and
supporting members and not-for-profit dermatology patient organizations through education, global campaigning, sharing of best-practices and beneficial networking opportunities to strengthen support for patients and build a strong, inclusive movement;
building special focus communities; and
conducting patient-initiated research.

GlobalSkin appeals as one voice to the World Health Organization and other key influencers to recognize the debilitating nature of dermatological disease so that more resources for research and treatment options are made readily available to those afflicted and in need of help.

The IPPF Board of Directors and staff are excited to welcome three new board members: Carolyn Fota, Laurence Gallu, and Michael Rigas.

Carolyn Fota

Carolyn Fota was a newly retired Lieutenant Colonel, United States Army, Medical Service, in October 2015 who was finally going to enjoy time with family after a simple surgical procedure at Walter Reed National Military Medical Center, Maryland. However, within 24 hours of the procedure, hives and then blisters broke out across her body. It was the beginning of a nightmare that no one ever expected.

By December, a small army of medical staff at Stafford Hospital, Virginia; Fort Belvoir Community Hospital, Virginia; Walter Reed National Medical Center, Maryland; and the Mayo Clinic, New York, were collaborating on Carolyn’s intense medical support.

Finally, in February 2016, she was diagnosed with bullous pemphigoid. Treatment consisted of oral and topical steroids, tetracycline, nicotinamide, probiotics, Benadryl, magic mouthwash, and vitamin D3. Topical steroids were applied to her legs and arms, which were then wrapped in sterile dressings. She underwent intensive wound care for the next six months.

Carolyn is active in the IPPF community through peer health coaching, Mid-Atlantic Support Group leadership, advocating on Capitol Hill to our nation’s leaders, and participating in various IPPF projects whenever asked. She resides in Stafford, Virginia, with her husband of over 27 years, Francis. Carolyn enjoys golf, walking, church activities, and writing.

Laurence Gallu

Laurence Gallu returned to her native France after living in New York City for 30 years. She currently lives in Paris with her husband. She taught French language and literature at Smith College, NYU, and at Professional Children’s School in NYC. In Paris, she worked for the Columbia University’s Paris annex as coordinator of studies, acting as liaison between the French university system and US professors and undergrads. She retired after 12 years in 2016.

Laurence was diagnosed with pemphigus vulgaris in 2015. She was offered the opportunity to enter in a clinical trial called Pemphix that evaluated rituximab versus CellCept.

The treatment was a success, and she has been blister free ever since. Her doctor told her about the autoimmune blistering disorder (AIBD) French patient organization, the Association Pemphigus Pemphigoïde France (APPF). Benefitting from the APPF’s support and advocacy, she wanted to help provide these invaluable services to others. She began using her knowledge of English to translate documents and brochures, and was soon going to English speaking congresses, meeting with other AIBD patient organizations, and acting as a liaison with AIBD patient organizations in other countries.

Her involvement with the IPPF started when Marc Yale invited her to a conference in Lübeck, Germany, in 2017. When the IADPO-Global Skin (Rare Derm, and Global Skin Europe) and the European Reference Networks (ERNs) were created that same year, she became the APPF representative. In the ERN SKIN network, she has been the European Patient Advocacy Group (e-PAG) representative for her AIBD’s group since 2018.

Laurence has been closely linked to the IPPF especially since the last non-virtual IADPO-Global Skin conference (in Milan) where she met with Marc and patient advocates from PemFriends (UK) and the ANPPI (Italy) after discussing the creation of a consortium of AIBD organizations. When the time difference allows, she attends IPPF Patient Education Series webinars, which are always clear and informative.

Michael Rigas

Dr. Michael Rigas is the Chief Clinical Officer emeritis, co-founder, and principal in KabaFusion, an infusion therapy company started in 2010 that is dedicated to managing IVIG, and other chronic and acute therapies nationwide. Before this, in 2008 he joined Geisinger Health System as its Associate Chief Innovation Officer for Pharmaceutical Care and Chief Clinical Officer for VITALine CareSite Pharmacy Services. Over the last 20 years, Dr. Rigas has managed or overseen the care of over 15,000 patients who have received over 20,000,000 grams of IVIG.

Before moving to Geisinger, Dr. Rigas served as the Senior Vice President of Clinical Affairs at Crescent HealthCare in Anaheim, California, a large alternate site pharmacy company specializing in infusion and specialty pharmacy therapies.

Before this, Dr. Rigas was the Chief Clinical Pharmacist at three hospitals over a 10-year period. He graduated from the USC School of Pharmacy with his Pharm.D. Degree and completed his residency at UC San Francisco Hospitals and Clinics in 1982. He spent the first 10 years of his career in the hospital arena serving as the chief clinical pharmacist in three different, 200+ bed community hospitals. From 1998 to 2002, Dr. Rigas managed pharmacies and nursing operations for a nationwide infusion company with 32 pharmacies in 22 states at the vice president level.

Dr. Rigas’ areas of expertise includes antimicrobial therapy, immunoglobulin therapies, nutritional support, inotropic therapies, pain control, improving clinical and financial outcomes, and payer and contract relations. He is also active in the High-Cost Biologic/Specialty Pharmacy and infusion industries. He has worked on standardized coding for infusion billing, universal access via Patient Assistance Plans, and managing Medicare Part D issues in front of the California board of pharmacy and CMS regional managers. Dr. Rigas holds membership in the American Society of Hospital Pharmacists, the National Home Infusion Association, the American Academy of Neurology, and the Clinical Immunology Society.

by Marc Yale

It is with mixed emotions that I inform you that I am stepping down as the Executive Director of the IPPF. Over the past several months, the IPPF performed an intensive search for a new executive director to lead our community going forward. We were fortunate to find an experienced individual who is equipped to meet the unique challenges that our community faces. The IPPF is in good hands with Kevin Mead, who will be taking over as the Executive Director of the IPPF.

Although I am stepping down, I will continue to volunteer part-time with the IPPF and serve in the new role of Advocacy/Research Coordinator. I will continue to work to advance disease awareness, patient advocacy, and accelerate research and development for the IPPF community. After being diagnosed with MMP, I joined the IPPF in 2008 as a peer health coach. I have served, and will continue to serve, in that capacity as well.

Thank you for your unwavering support, and please join me in welcoming Kevin! I look forward to watching the IPPF continue to move forward in support of patients around the world, be a leading advocate for the rare disease community, and advance research toward finding a cure!

“I am delighted to join the Foundation. It is clear that the team of staff, Board of Directors, and volunteers have built a responsive and dynamic organization. I look forward to being a part of the next chapter for the IPPF and to “meeting” many of you at the upcoming Virtual Patient Education Conference.” –Kevin Mead

Kevin joins the IPPF from Spokane County United Way, where he was the VP of Resource Development. At United Way, Kevin developed fundraising and volunteerism initiatives. Before United Way, Kevin was the CEO of PrimeGlobal—a worldwide association of accounting firms— for 16 years. At PrimeGlobal, Kevin directed a remote staff of 16 on four continents organizing events, developing networking tools, and benchmarking member operations. He also merged three organizations into one and grew the organization 400%.

From 1994 to 2001, Kevin worked for the Institute of Internal Auditors (IIA). While at the IIA, Kevin held a number of positions, including Manager of Conferences, Manager of Field Services, and Manager of Certification Development.

Kevin has presented at seminars and conferences throughout Europe, North America, and Asia on topics that include association management, risk, and auditing. He holds a bachelor’s degree in economics and master’s degrees in audit and international association management. Kevin is a Certified Association Executive (CAE), a Certified Internal Auditor (CIA), and a Certified Information Systems Auditor (CISA).

In addition to his professional responsibilities, Kevin is a rugby referee and restores and rides old motorcycles.

Meet Kevin at the 2020 IPPF Virtual Patient Education Conference, Oct 2-4!

Thank you to everyone in our community for making 2018 a great year!

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The IPPF had another great year in 2016. Here are a few highlights:

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.

Events

About the EveryLife Foundation for Rare Diseases

About GlobalSkin

Carolyn Fota

Laurence Gallu

Michael Rigas