Events

Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Toby and become a Healing Hero today.

Do you remember being diagnosed?

That feeling of being alone with a rare disease?

Most newly diagnosed patients have never met another
person with pemphigus or pemphigoid (P/P).

That’s where IPPF Peer Coaches come in. 

An IPPF Peer Coach is often the first person a patient connects with who “gets it.” Here’s your chance to make sure that the Peer Coach program can continue.

A monthly gift of $30 or more allows IPPF Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with P/P. They help patients know that they’re not alone. 

Introducing Toby, a pemphigus patient . . . 

Toby became a Healing Hero determined to pay it forward so other patients don’t have to feel alone. Don’t miss her compelling story.

BECOME A HEALING HERO

Make a contribution like Toby did . . . 

Give what you can now! 

“I could not have gone it alone, and I want others to experience the same comfort and support I received. Help me pay it forward and fund the future by becoming a Healing Hero.”

Monthly Sustaining Gift Options

IMPROVE PATIENT ACCESS TO CARE ($15)
Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.

HELP THE NEWLY DIAGNOSED ($30)
Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.

ACCELERATE DIAGNOSIS TIMES ($75)
Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign. 

FUND ESSENTIAL RESEARCH ($100)
Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.

Become a Healing Hero

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

BECOME A HEALING HERO

Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Sally and become a Healing Hero today.

Make better patient “access to care” a reality.

Become a Healing Hero.

And start making a difference today.

Because pemphigus and pemphigoid are so rare, it can be difficult for patients to find doctors with experience in treating these diseases. Sally, a mucous membrane pemphigoid (MMP) patient, became a Healing Hero in 2017, shortly after being diagnosed. Her local doctors were unfamiliar with the disease, but luckily, she was able to find a local specialist through the IPPF’s Find a Doctor map.

“Without the IPPF, I don’t know what I would have done. But I do know that my treatment would have been tragically delayed. I highly encourage you to become a Healing Hero and pay it forward so that the IPPF is there for us as well as for those with pemphigus and pemphigoid around the world.” 

A monthly gift of $15 or more would make a tremendous difference, help patients like Sally, and allow us to screen and add new medical professionals to our Find a Doctor map, increasing patients’ access to care. 

BECOME A HEALING HERO

Monthly Sustaining Gift Options

IMPROVE PATIENT ACCESS TO CARE ($15)
Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.

HELP THE NEWLY DIAGNOSED ($30)
Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.

ACCELERATE DIAGNOSIS TIMES ($75)
Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign. 

FUND ESSENTIAL RESEARCH ($100)
Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.

Become a Healing Hero

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

BECOME A HEALING HERO

Healing Heroes are the heart of our community. They go above and beyond to support the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid. Join Dr. Donna Culton (University of North Carolina at Chapel Hill) and become a Healing Hero today.

Join the heart of our community and become a healing hero.

“I became a Healing Hero because I wanted to give back to the IPPF… Please join me in paying it forward by becoming a Healing Hero today.”

Monthly gifts allow us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

BECOME A HEALING HERO

Monthly Sustaining Gift Options

IMPROVE PATIENT ACCESS TO CARE ($15)
Your monthly gift of $15 allows us to screen and add a new medical professional to our Find a Doctor map, increasing patients’ access to care.

HELP THE NEWLY DIAGNOSED ($30)
Your monthly gift of $30 allows our Peer Coaches to support 75 members of our community by providing them with resources, tips, and tricks on how to live and thrive with pemphigus and pemphigoid.

ACCELERATE DIAGNOSIS TIMES ($75)
Your monthly gift of $75 raises disease awareness by educating 75 medical professionals through our Biopsies Save Lives campaign. 

FUND ESSENTIAL RESEARCH ($100)
Your monthly gift of $100 helps us conduct the ongoing Natural History Study to better understand pemphigus and pemphigoid.

Become a Healing Hero

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

BECOME A HEALING HERO

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Make an impact and unite our global community

Rob’s Story

If someone with a rare disease can consider themselves lucky, I am lucky to have found the IPPF and the annual Patient Education Conference only a few weeks after being diagnosed with pemphigus vulgaris (PV). The 2020 conference made a huge difference in my quality of life. The conference came at a critical point during my initial treatment and helped me understand my diagnosis and how to care for my mouth and skin. Most importantly, I heard from expert physicians about treatment options, including steroid sparing medications. The knowledge I gained from the conference allowed me to advocate for myself and make educated treatment decisions with my doctors.

I’ve continued to actively participate in the IPPF Patient Education Webinars. These webinars are an amazing opportunity to learn about PV and to pose questions to national experts. I even found my current dermatologist from one of these webinars. The webinars also cover important topics related to living with an autoimmune disease. The IPPF’s coverage of Covid and the updates provided on clinical research have been especially valuable. I also appreciate the advocacy that IPPF does on Capitol Hill for our conditions. Raising awareness with legislators and agencies, like the FDA, is critical for improving our lives and treatment options.

The IPPF has made a big difference in my life and managing my PV. I am grateful for the work it does, and I am proud to make donations to support this work.

Our mission is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join Rob and donate to the IPPF to help us ensure that our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Maria Hernandez

Maria’s Story

“I connected with the IPPF in 2017 when I was diagnosed with pemphigus vulgaris (PV). After numerous doctor and ER visits, with no relief or answers, I connected with IPPF peer coach, Mei Ling Moore. She immediately emailed me, and personally called me to introduce herself and tell me about the IPPF. She guided me to the right doctors at UCSF, in San Francisco, CA. Mei Ling made herself available for any questions and concerns and followed up with me after my first appointment. I continue to stay in touch with any questions and update her with my continued progress. The IPPF has been very supportive through my journey to remission. I am forever grateful for this organization. They continue to help me and others to make our load a little lighter and to allow us to feel RARE, but not alone. Join me in giving back to others in our community, by donating to the IPPF community today.”

In 2022, we’ve helped 500 people navigate through the journey of living with pemphigus and pemphigoid through our Peer Coach program. Your tax-deductible donation ensures programs like this are available to all those who need them today, tomorrow, and for years to come. Join us to unite our global community, now through the end of the year.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

The IPPF is doing its best to give a voice to the pemphigus and pemphigoid community, in the U.S. and worldwide.

Mei Ling’s Story

Mei Ling was diagnosed with pemphigus vulgaris (PV) in 2002. She reached remission in 2012, the same year she started as an IPPF Peer Coach. In addition to this role, she organizes the Southern California Support Group meeting with Marc Yale.

When Mei Ling was asked how she started as a Peer Coach and what she wants the pemphigus and pemphigoid (P/P) community to know about the IPPF, Mei Ling said:

“I had just retired from my job at an architectural firm when I was asked by the Executive Director of the IPPF at the time, Will Zrnchik, if I would like to become a peer coach. He had noticed that at one of the IPPF Patient Education Conferences I attended, that I was very outgoing and I interacted well with the other patients. He also knew that I was very helpful at most of the Southern California support group meetings which Marc Yale organized. When he asked me, I was rather taken aback, because I didn’t think I was professional enough to join the organization, but he assured me otherwise. Janet Segall and Marc Yale were very helpful to me in learning how to effectively help patients who asked for assistance.”

“The IPPF is doing its best to give a voice to the pemphigus and pemphigoid community, in the United States, and worldwide. There are over 7,000 rare diseases that we know of, and more than 350 million people living with one worldwide, and few FDA approved treatments for P/P patients (as is the case with other rare diseases). The IPPF advocates for more research and awareness, and helps P/P patients everywhere through Patient Education webinars and by providing peer support through the Peer Coach program.”

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us to unite our global community, now through the end of the year. Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Janet and the IPPF saved my life during an emergency flare by helping me find a doctor. -Lee Heins

Lee’s Story

I became symptomatic with pemphigus vulgaris October 31, 1994. This was the same month that Janet Segall founded the IPPF. Janet found me as a result of an introduction letter she sent to many Southern California dermatologists, and in particular, a Kaiser dermatologist friend of mine. 

Five months later, I attended the first Los Angeles Support Group Meeting. This was my first introduction to the amazing IPPF community. Five years later, Janet and the IPPF saved my life during an emergency flare by helping me find a doctor at USC Medical Center. My gratitude to the IPPF later led me to join the Board of Directors and serve as the Treasurer.

Please join me in supporting the IPPF. Family and friends may also make a donation in your honor by selecting the “dedication option.”

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us to unite our global community, now through the end of the year. Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

This December, we’re sharing stories from people who have have helped unite our global community so that patients don’t feel as alone. We’ve made great strides in recent years, but there is still much work to be done. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

When I started the Foundation, my main focus was to connect with others and to help patients.

Janet Segall was diagnosed with pemphigus vulgaris in 1983. She founded the IPPF in 1994 with the goal of connecting others and helping patients. She continues to support patients as a Peer Coach, a role she has had for almost 10 years. “When you are diagnosed with such a rare disease as pemphigus and pemphigoid, one of the most difficult things is to find others to relate to. It makes you feel alone, like you’re the only one with the disease. A Peer Coach can help someone in so many ways. As a Peer Coach, I get to help patients understand their disease and their feelings. A Peer Coach has been there, so they can be there for both patients and their support system.”

When she was asked how people can get involved with the IPPF, Janet suggested:

“There are so many ways. You could volunteer your time, share your story, or participate in a clinical trial. However, sometimes volunteering isn’t possible so making a donation can have a huge impact. You could either make a one-time donation, or become a Healing Hero. Healing Heroes make monthly donations and help keep the IPPF alive to make sure we are always present for others who are diagnosed with these diseases.” 

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us to unite our global community, now through the end of the year. Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

DONATE

By Michael Rigas, Pharm.D.

Pass the Mic with Dr. Mike the Pharmicist

The first video in our new series, Pass the Mic with Dr. Mike, the Pharmacist is available.

Patients with Autoimmune Blistering Diseases (AIBD) may require multiple oral, topical, and intravenous drugs to obtain the best clinical outcomes. Obtaining this drug therapy requires the patient to interact with multiple physicians, pharmacists, pharmacies, drug wholesalers, and insurance companies. What is the pharmacists’ role in this process? 

In many respects, the pharmacist acts as the coordinator of this process since they function at the intersection of the physician’s prescription, the drug makers’ FDA-approved product, the drug wholesaler, the insurance company’s authorization and payment for the medication, and the patient, for whom all these actions are taken. 

Relative to the patient experience, the pharmacist’s main duties can be categorized into five main areas. Let’s discuss each separately to see how it impacts the patient’s experience and clinical outcome.

  1. Prescription processing: This is the main coordinating function the pharmacist manages for the patient. When the prescription is received (usually electronically nowadays), the pharmacist compares the drug ordered to the patient’s diagnosis, history, and physical to see that there is a match and that there are no major issues such as the patient’s allergies, the inventory in the pharmacy or the drug wholesaler at that time, the insurance companies formulary and approved diagnosis that would allow coverage for the drug for the patient that is for their disease. The pharmacist also verifies what the patient’s coverage would be and what the patient’s out-of-pocket costs would be, and verifies that the prescriber is licensed to prescribe in the patient’s state of residence. They also check to verify that the physician is not on any state or federal list of prescribers who are barred from prescribing for many reasons. Finally, the pharmacist tabulates the time needed to accomplish all of these events to assure the availability of the drug and how rapidly the patient needs the drug to match. 

In some instances, for oral generic drugs, this whole process may be accomplished in 15 minutes or less. But, in other more complex cases that involve costly oral, topical, or intravenous medications, this process may take days or weeks. This may depend on the availability of the drug, the possible need for more patient clinical data to be submitted, additional laboratory testing, etc., that may be required to obtain authorization for the ordered therapy from the insurance company. This protracted process may involve written appeals by the physician/pharmacy or a telephone consultation with the prescribing doctor and the insurance company’s doctors. 

  1. Patient support and safety: During the many steps in the above process, the pharmacist analyzes multiple issues and data points to assure that the likelihood of clinical, temporal, logistical, and financial harm to the patient is minimized. This may involve checking for allergic responses to ordered medications based on their history, or checking to see that the time needed to complete the above process is consistent with the acuity of the patient’s needs and other planned activities ( i.e., other medical procedures or tests, vacations, etc.), and that the out-of-pocket costs that the patient will be facing as a result of the ordered medications are minimized. 
  1. Patient education: This is an important function where the pharmacist compiles information from various sources and shares with the patient details about drug dosage and dose frequency, expected rapidity of drug effect, drug storage, expected drug side effects, and whom to call if an issue occurs. Education may also include issues surrounding home safety, fall prevention, and tips to better manage the other diseases the patient may have relative to the newly ordered drug therapy. 
  1. Billing and associated actions with the insurance company: One of the most important functions of the pharmacy and pharmacist is their “customer service” functions which mostly surround the insurance company’s billing on behalf of the patient and adjudicating the patient’s out-of-pocket costs. On the one hand, this function may be completely managed electronically in a few minutes for inexpensive oral medications. Alternatively, this function may take days or weeks for more expensive, infused medications. Interaction between the pharmacy, the payor, and the ordering physician is typically required initially, and maybe in an ongoing fashion if the authorization is denied and an appeal is needed, to obtain the payor’s authorization for payment. 

While this is happening, the pharmacist is evaluating the out-of-pocket exposure to the patient for the drug(s) ordered to see if there is anything clinically equivalent that is available that may result in a lesser out-of-pocket cost to the patient. Suppose there is a less costly, clinically equivalent product available. In that case, the pharmacist calls the ordering physician to discuss it with them, get the order changed, and then reaches out to the payor for authorization reflecting the new lowered out-of-pocket costs.

Finally, suppose the patient cannot afford their out-of-pocket costs. At the patient’s request, the pharmacy may explore drug company-based and non-profit foundation-based financial assistance programs for which the patient may qualify. The sum of these programs may make the drug affordable to the patient.

  1. Regulatory compliance: This is a complex concept. It ensures that all the data collected from each patient’s prescription processing and dispensing is properly collected, stored, and reported to the inquiring party. These parties include:
    1. The state board of pharmacy
    2. The patient’s insurance company
    3. Medicare
    4. Medicaid

The pharmacist must also assure that the prescriber is licensed to prescribe the exact products ordered in the patient’s state and is not on any lists of suspended or disbarred prescribers.  

These audits may be known and planned for or may be a surprise in nature. Poor performance in these audits may result in the pharmacy being sanctioned, removed from the payor contract, fined, or closed down. 

As you can see, there are a lot of actions behind the scenes that make the pharmacist a key player in the healthcare team. Pharmacists are extremely knowledgeable about the medications you have been prescribed and are traditionally underutilized by patients, and their role is often misunderstood. I hope this information has helped you better understand the pharmacist’s important role in your healthcare and well-being.  

Watch the video

Join us in uniting our global community today and every day. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Giving Tuesday

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us in uniting our global community this Giving Tuesday. We’ve made great strides in recent years, but there is still much work to be done.

Together, we can unite our global community by:

  • connecting patients with Peer Coaches 
  • sharing resources about living with P/P
  • advocating for better access to care

Your support directly impacts patients like Ellen, who is “living successfully with pemphigus, along with several other pem-pals and blister-sisters in Boston.” Join Ellen in uniting our global community on this global day of giving. Your support is critical in ensuring that our programs are available to all those who need them today, tomorrow, and for years to come.

DONATE
Ellen Levine Giving Tuesday
WATCH NOW

The IPPF community brings together patients, caregivers, top physicians, and researchers to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

This year we’re kicking off Giving Tuesday by sharing how the IPPF has made an impact in patient’s lives. Join us in uniting our global community on November 29. Even in times of economic uncertainty, we each have a deep reserve of generosity, and can make a difference.

Giving Tuesday 2022

Our goal at the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid. Join us in uniting our global community for Giving Tuesday on November 29. We’ve made great strides in recent years, but there is still much work to be done.

Together, we can unite our global community by:

  • connecting patients with Peer Coaches 
  • sharing resources about living with P/P
  • advocating for better access to care

Check out IPPF Peer Coach Scott Taub’s video to learn more about how the IPPF’s invaluable resources have helped Scott and how you can get involved to make an impact on Giving Tuesday.

DONATE
Scott Taub: Unite our Global Community
WATCH NOW

The IPPF community brings together patients, caregivers, top physicians, and researchers to improve the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

Your tax-deductible donation ensures our patient support programs are available to all those who need them today, tomorrow, and for years to come.

Interested in sustaining your impact by becoming a Healing Hero with a monthly donation instead? Check out our Healing Heroes program here.

Our “Inspiring Hope” series shares patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. This week’s story, Foundation of Hope, comes from Janet Segall, the founder of the IPPF.

I am in awe of the wonderful people who have worked to make this organization into what I dreamed about.

I know many of you can relate to how it first felt being diagnosed with pemphigus or pemphigoid (P/P). After about a year of symptoms, I was diagnosed in 1983 and in a daze. I was in my mid-thirties and raising a child by myself. She was six years old. 

Although it took about a year to get an official diagnosis, I got one pretty quickly once I had more than one or two lesions. Prior to receiving a diagnosis, I went to the dentist to get my teeth cleaned and mentioned to him that I had these body and mouth sores. He got a book from his shelf (no internet yet), opened the page to pemphigus vulgaris (PV), and read, “sores on the body, sores in the mouth—this could be pemphigus vulgaris.” As he read the description of the disease, I knew that was what I had. The last words he read were, “This is a fatal disease.” I walked out of his office with my head down, feeling numb; his staff looked at me like I was a corpse. My first thought was about who would take care of my daughter since she had lost her dad when she was a baby.

I wanted to find other patients. First, I called my doctor and asked if she had heard of a support group or foundation, and she told me there were none. I felt very alone. I thought a lot about starting my own organization right away, but I hadn’t reconciled the fact that I had this disease. Finally, after living with PV on and off for over 10 years, I decided to start a foundation.

The National Pemphigus Vulgaris Foundation was born in 1994 with help from one of the finest dermatologists in the country, Dr. Grant Anhalt, at Johns Hopkins University. He supported me throughout the entire process. The Foundation started as a support network for PV patients, but we later added pemphigus foliaceus and pemphigoid. When the Foundation became the International Pemphigus and Pemphigoid Foundation (IPPF), it was exciting. Traveling overseas to Israel, Italy, and London to start support groups was thrilling. Uniting people from across the globe in their quest for answers made me feel that I had done something good.

The Foundation’s main vision when it started in 1994 was to make sure that no one with P/P would ever feel alone like I did during those first years after I was diagnosed. I am in awe of the wonderful people who have worked so hard to make this organization into what I dreamed about. Thank you to everyone who is committed to this endeavor.

I am so grateful for experiencing the growth and success of the first 26 years of the IPPF. For the next 26 years, I hope for a cure for P/P and that more people will continue to care and help each other.

Janet Segall is the Founder of the IPPF and a PV patient since 1983. She is a peer health coach and works in Sacramento, CA in the mental health field. 

Fund the Future

Be a Healing Hero

Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

Fund the future. Be a Healing Hero!

FUND THE FUTURE

Our “Inspiring Hope” series shares patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our fourth story comes from David Baron in Chicago, IL.

My story starts in 2004. I was a happy, healthy 28-year-old enjoying my life. I was an airline pilot working my dream job, and life could not have been better. All that changed when my body decided to attack itself. I was on a layover in August 2004, when I woke up with a nasty sore throat. It felt like I had swallowed broken glass and I thought I had strep. I had one flight home, and I went straight to urgent care. The doctor told me that my tonsils were ulcerated, it was likely viral, and it would clear up in a week. After one week, my tonsils healed, and I went back to work. 

Things were good for about a month, then my sore throat came back even worse. This time, I went to an emergency room. The nurse did a strep test, and when she pulled the swab out of my mouth, it was covered in blood. Shocked, she quickly left to get the doctor. A number of x-rays and exams were performed, and about 15 vials of blood were taken. All of the test results came back normal, and the doctors didn’t know what was wrong. They recommended I see an ear, nose, and throat (ENT) specialist.

When I saw the ENT the following week, he told me it was bacterial and that I needed antibiotics. I was on and off antibiotics for the next three months, and the sores in my mouth appeared and disappeared every few weeks. By late 2004, my ENT told me I needed to have my tonsils removed. As an adult, the recovery from that surgery was not easy. 

Things seemed to be better for a few months, but in late February 2005, the sores in my mouth returned. I felt it was time for a second opinion. I found a new primary care doctor who told me, “I don’t know what you have, but I’ll help you find out.” That was something I needed to hear. Even though I didn’t have answers, I felt better that I had a doctor willing to admit that they didn’t know.

My mouth sores continued to get worse, and my doctor continued running tests that all came back normal. Eventually it got so bad that I had trouble eating and drinking, and I became dehydrated. I was admitted to a local hospital. I had a team of infectious disease doctors working on me. They tested over 20 vials of blood each day, and again the results came back normal. I was sent home without any answers. 

A week after I came home from the hospital, I started getting blisters on my chest. My primary care doctor referred me to a local dermatologist, and I will never forget that appointment. The dermatologist walked into the office, saw my chest, and said, “I know what you have, it’s very serious, and I can’t treat it.” He referred me to the University of Chicago and wrote the words pemphigus vulgaris on a piece of paper.

The first thing I did after that appointment was search online for pemphigus. The first result I found scared me. It said that if the disease didn’t kill me, the treatment would. Luckily, the second result was the International Pemphigus and Pemphigoid Foundation (IPPF). The IPPF website had significant information on treatments and living with pemphigus. While I was still scared, the information I found helped me feel more at ease. 

I was now under the care of a dermatologist who had treated pemphigus before, but the initial treatments were not working. I was still continuing to get worse every day. One particular low point was the day my treating doctor walked into my hospital room and said, “I don’t know what other treatments to try.” When I was at my low point, the IPPF was there for me. I needed to find an expert, and the IPPF helped. Through the IPPF I found one of the most knowledgeable dermatologists in the world. I emailed him on a Monday, and he replied within 30 minutes, asking if I could come in two days later to see him. Thanks to that doctor and the IPPF, I not only recovered, but I spent 13 wonderful years in remission. 

Even today, the IPPF is still there when I need them. I recently had a flare, and after spending 13 years in remission I needed to find a new treating dermatologist. With the help of the IPPF and the Find a Doctor map, I was able to find a very knowledgeable new doctor. Any time I’ve needed help, the IPPF has been there for me.

David Baron is a pilot for a major airline in the United States. He lives in the Chicago area with his family.

Fund the Future

Be a Healing Hero

Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

Fund the future. Be a Healing Hero!

FUND THE FUTURE

Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our second story comes from Ellen Levine in Boston, Massachussetts, USA.

Ellen Levine is from Boston. She works at a foundation that supports leading scientists at Harvard Medical School and at institutions in Italy in the pursuit of scientific discovery in the field of medicine. She was the recipient of Harvard Medical School’s 2019 Dean’s Community Service Staff Award for her work with the IPPF.

During the months that led up to my pemphigus diagnosis in 2007, the range of emotions I felt were not unusual. My emotions were very similar to those patients before me who had also experienced the uncertainty and confusion that arises when debilitating and painful symptoms mysteriously appear out of the blue.

I was filled with an overwhelming fear of the unknown and had so many questions. What was wrong with my mouth, why weren’t these painful erosions healing, why were my gums bleeding, and what were these raw, scaly lesions on my scalp? 

My quest to find a specialist who could diagnose and treat this miserable condition felt like a never-ending nightmare. Awash in anxiety, I worked my way through an endless maze of obstacles, medical appointments, and insurance entanglements. I felt like Dorothy, frightened, following the yellow brick road in search of the Wizard of Oz.

The one thing that provided me with a sense of security and stability during that tumultuous time was the IPPF. Knowing that an organization like the IPPF existed was a dramatic turning point for me. Knowing I wasn’t alone in navigating a rare and persistent chronic illness gave me hope.

My initial involvement with the IPPF was as an active participant in the former email listserv group. Back in the day, before the creation of an IPPF Facebook page, an old-fashioned listserv was how pemphigus and pemphigoid (P/P) patients communicated regularly with one other. Each day, I looked forward to emails popping up in my inbox from people around the world who were also affected by these rare illnesses. People asked questions and gave advice while interjecting humor, understanding, and compassion in their correspondence. I made new friends who helped alleviate my fears and answered my questions. Facilitated by the IPPF, I learned so much from this community in those early days.

I was also fortunate to have consulted with Janet Segall, the founder of the IPPF and a peer health coach, who also answered my many questions while offering comfort and support.

Over the years, I’ve attended two IPPF Patient Education Conferences and have volunteered for the IPPF in multiple roles as a patient educator, awareness ambassador, Boston Support Group leader, and booth leader at the annual Yankee Dental Congress in Boston.

The IPPF lives up to its mission by improving the quality of life for all people affected by P/P through early diagnosis and support. And it’s my fervent hope that the IPPF’s vision of finding a cure comes to fruition. However, the IPPF can’t do any of this without help. The IPPF gives to us, and we should give to the IPPF in whatever capacity we can. Whether through volunteering or financial giving, we too, can make an impact.   

Thanks to modern medicine, great physicians, and the IPPF, I’ve learned to live confidently and successfully with a rare and chronic condition. Because of the IPPF, I don’t feel alone with my disease. I encourage anyone who has been diagnosed with—or suspects they may have—pemphigus or pemphigoid to connect with the IPPF, which has grown in leaps and bounds since my diagnosis in 2007. You will be in the best of hands.

Fund the Future

BECOME A HEALING HERO

Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

Fund the future. Be a Healing Hero!

FUND THE FUTURE

Welcome to our “Inspiring Hope” series. For the next several weeks, we’ll share patient stories from around the world that show what it’s like to live—and thrive—with pemphigus and pemphigoid. Our first story comes from Noel Mudibo in Kenya.

Noel Mudibo is a pemphigus vulgaris patient from Kenya. He is also a passionate volunteer social worker with 11 years of experience. He has a BS in Financial Economics, Diploma in Petroleum Geoscience and Accounting Level 2. Additionally, he is a fiction writer currently writing about his childhood friend that was killed by the police in a Nairobi ghetto. He recently finished writing a compilation of traditional African children stories. This is his story.

Since childhood, I have had several health challenges. I had intestinal surgery at the age of two. At the same time, doctors discovered that I had an eye problem. Immediate action was not taken due to my parents’ financial constraints, which caused me to pay a heavy price. Years later in 2010, an ophthalmologist discovered that I had dual keratoconus, and they performed corneal transplants on my left eye in 2012 and my right eye in 2013. In 2014, I embarked on a transformative academic journey.

The turning point of my life happened in January of 2016. I developed lesions all over my body, including painful lesions on my tongue and groin, and blisters appeared in my mouth. I also suffered from severe constipation and bloody stools, and I needed to take strong painkillers. I experienced fevers, body weakness, and fatigue. Whenever I swallowed certain food, I felt a lot of pain. My skin became pale, and I developed brownish spots all over.

At the time, I was still in college. People thought I had HIV, but my friends took me for testing, and I was negative. I was still in a lot of pain and surviving on pain medication. I went to a clinical officer who examined me and told me I was suffering from an autoimmune condition called pemphigus vulgaris (PV). I was prescribed prednisone, but it did not make much of a difference as I continued to get lesions. At one point, my flare up was so bad that I had to be admitted to the hospital for two days.

In 2018, I saved 40 dollars and went to see a skin specialist who also told me that I had PV and that I needed an urgent treatment. He prescribed a combination of steroids. I felt better when I started the medications, but not completely. I still had frequent, severe flare ups. These flare ups would keep me grounded for several days and out of class.

I started researching pemphigus conditions online. I read about the research that had been done on treatments, including testimonies of people who have had pemphigus. Some patients died, some went into remission, and some of their conditions were still very active. During this research, I came across the IPPF. I also started searching for other people in Kenya who were suffering from PV, and I found quite a few. Some of them had very serious conditions that they succumbed to. I was very sad about that.

I continued my efforts to connect with the IPPF, and I started reading PV articles and testimonies with positive stories about people who had gone into remission and whose lives were almost back to normal. This information encouraged me a lot. I started communicating with the IPPF Outreach Director, Becky Strong- herself a PV patient in remission.

The articles on the IPPF website became my daily religion. I started reading them routinely and sharing them with other PV patients in Kenya. Some patients are not educated, so I have had to interpret the information for them. There are also some people in Kenya who believe PV is due to witchcraft.

Even though medication is quite expensive here and I sometimes go months without getting required steroids, I live a positive life full of hope and faith. I hope that one day, this condition will go into remission like Becky Strong.

During the COVID-19 pandemic, I have had challenges, but knowing that my immune system is low, I adhere to directives to stay indoors. In addition, I have recently filled out surveys provided by the IPPF. My most important request is for the IPPF to open an African office in Kenya. So many people here are suffering from PV, but they don’t have proper information.

Fund the Future

BECOME A HEALING HERO

Healing Heroes fund the future of the IPPF community by making sustaining, monthly gifts to support our mission of improving the quality of life for all those affected by pemphigus and pemphigoid.

By becoming a Healing Hero, you provide for the greater good of our community by sharing our vision:

NO DISEASE IS TOO RARE FOR A CURE!

Whether you’re a patient, caretaker, family, friend, medical professional, or rare disease advocate, your monthly gift allows us to not only sustain current programs, but also expand our key areas of operation: patient support, education, awareness, research, and advocacy.

Fund the future. Be a Healing Hero!

FUND THE FUTURE
Central News Agency (CNA) file photo.

Several new drugs used to treat different types of cancer are to be included in the national health insurance (NHI) program for the first time later this year, a government agency said on Tuesday, September 8.

In a press release, the National Health Insurance Administration (NHIA) announced that following an Aug. 20 meeting, it was decided that new medicines for treating triple-negative breast cancer, ovarian cancer, follicular lymphoma and medullary carcinoma will be covered by the program in November.

In addition, rituximab, a biologic agent that can treat pemphigus vulgaris, will also be added to the program, benefiting about 600 patients suffering from the blistering autoimmune disease that affects the skin and mucous membrane. Currently, severe pemphigus vulgaris patients can only be treated with steroids which often have noticeable side effects, Huang said.

Read the full article here.

Cabaletta Bio, Inc., a clinical-stage biotechnology company focused on the discovery and development of engineered T cell therapies for patients with B cell-mediated autoimmune diseases, announced on May 6, 2020 that the U.S. Food and Drug Administration (FDA) has granted Fast Track Designation for DSG3-CAART (Desmoglein 3 Chimeric AutoAntibody Receptor T cells), the Company’s lead product candidate for treatment of mucosal pemphigus vulgaris (mPV), for improving healing of mucosal blisters in patients with mPV.

“We believe that this Fast Track Designation, coming shortly after the Orphan Drug Designation for DSG3-CAART, further demonstrates that mPV is a devastating, rare disease for which patients have limited treatment options resulting in a large unmet need. The Fast Track Designation represents an important next step in our clinical development plans,” said David J. Chang, M.D., Chief Medical Officer of Cabaletta. “We appreciate the benefits provided by this designation, including the opportunity for increased access to the FDA and potential acceleration of our clinical development path and regulatory review process.”

The FDA grants Fast Track Designation to drugs or biologics to facilitate the expedited development and review for therapeutics intended to treat serious or life-threatening conditions and to address unmet medical needs. Companies that receive Fast Track Designation are eligible for several potential benefits including the opportunity for more frequent meetings and interactions with the FDA during clinical development as well as eligibility for accelerated approval and/or priority review, if relevant criteria are met. Companies may also be allowed to submit sections of their Biologics License Application (BLA) on a rolling basis.

Read the full press release. 

Cabaletta Bio, Inc., a clinical-stage biotechnology company focused on the discovery and development of engineered T cell therapies for patients with B cell-mediated autoimmune diseases, announced on January 29, 2020 that the U.S. Food and Drug Administration (FDA) has granted Orphan Drug Designation for the Company’s lead product candidate, DSG3-CAART, for the treatment of pemphigus vulgaris (PV). DSG3-CAART is designed to target the cause of mucosal PV (mPV), B cells that express pathogenic autoantibodies directed against the DSG3 protein, while preserving normal B cell immune function.

“Mucosal pemphigus vulgaris is a rare and potentially fatal, chronic autoimmune disease characterized by the loss of adhesion between cells of mucous membranes, resulting in widespread damage, painful blisters of the mucosal membranes, and increased susceptibility to life-threatening systemic infections,” said David Chang, M.D., Chief Medical Officer of Cabaletta. “For affected patients, despite current treatment options, there is an urgent unmet need for more effective and durable therapies that can provide reliable, complete, and persistent remission from the disease beyond general immune suppression and B cell depletion provided by current treatment options. Orphan Drug Designation is an important recognition for investigational therapies for rare diseases and provides us with potentially valuable benefits as we prepare to initiate the DesCAARTes trial to generate and then report acute safety data from the first cohort of patients by the end of 2020.”

The FDA grants Orphan Drug Designation to drugs or biologics intended to treat or prevent rare diseases or conditions that affect fewer than 200,000 individuals in the United States. This designation qualifies Cabaletta for certain incentives, which may include partial tax credit for clinical trial expenditures, waived user fees and potential eligibility for seven years of marketing exclusivity.

Read the full press release.

Cabaletta Bio, Inc., a clinical-stage biotechnology company focused on the discovery and development of engineered T cell therapies for the treatment of patients with B cell-mediated autoimmune diseases, announced this week that it has received clearance of its Investigational New Drug (IND) application from the U.S. Food and Drug Administration (FDA) to initiate a first-in-human clinical trial of desmoglein 3 chimeric autoantibody receptor T cells (DSG3-CAART) in patients with mucosal pemphigus vulgaris (mPV) to assess the safety and tolerability of DSG3-CAART in these patients. The Company anticipates enrolling the first patient in 2020.

“The FDA’s clearance of our IND for DSG3-CAART is an important milestone for patients with mPV and the first IND clearance for a product candidate from our Cabaletta Approach to selective B cell Ablation (CABA™) platform,” said Steven Nichtberger, M.D., Chief Executive Officer and Co-Founder of Cabaletta Bio. “DSG3-CAART is the first of several CAAR T cell product candidates in our announced pipeline, which includes product candidates targeting patients with MuSK myasthenia gravis, the mucocutaneous form of pemphigus vulgaris (PV), and hemophilia A patients with inhibitors to factor VIII therapy.”

mPV is a potentially fatal, B cell-mediated chronic, rare autoimmune disease that causes painful blisters and sores on mucous membranes of affected patients, leading to severe and sometimes debilitating and life-altering effects. DSG3-CAART is designed to selectively target and eliminate B cells expressing autoantibodies specific for DSG3 that are the cause of mPV while preserving healthy B cell immune function. DSG3-CAART has the potential to generate persistent complete remission off therapy while avoiding the adverse effects of chronic and generalized immunosuppression. Currently available treatment options induce broad immunosuppression, which put the patient at risk of infection and often provide only transient complete remission with subsequent relapses for patients with moderate to severe mPV. Approximately 4,250 patients suffer from mPV in the United States and 6,250 patients in Europe, which accounts for approximately 25% of all PV cases.

Read the full press release.

Help patients connect with the resources they need to live—and thrive—with pemphigus and pemphigoid.

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Our seventh story in the Patient Journey Series comes from Minatallah, a dental student at Virginia Commonwealth University. She had this to say after attending an IPPF Patient Educator lecture:

When applying to dental school, my initial feelings about dentistry centered on a yearning to help others. Our prerequisite courses required us to be involved within the community and provide for those in need of dental care. This helped open our eyes about what dentistry entails. However, I’ve learned that I can never say, “I’ve seen everything,” no matter how much I see. 

Upon starting dental school at Virginia Commonwealth University (VCU), we were welcomed with an abundance of plastic teeth. We drilled into mannequins some mornings, carved teeth out of wax some afternoons, and figured out ways to learn everything we needed to know about teeth and the human body. Our initial feelings about dentistry were diluted, and most of the information we learned was a memorization race for an upcoming test.

My first year of dental school finished up this year with a summer pathology class. My classmates and I were counting down the days until the end of the year. It felt like the life had been taken out of the field as we had gotten so comfortable with our mannequins and PowerPoints—until Becky Strong stood before our class. 

As Becky told her story about her battle with pemphigus vulgaris (PV), students became more alert than their normal, relaxed body language during lectures. I heard a few gasps and saw concerned glances being exchanged between students. It was like watching a thriller movie, but this was so real. It was clear we weren’t expecting to come in contact with anyone that described symptoms from our slides this early on. Moreover, we were under the impression that dentists don’t actually play a role in these stories, we just refer them to a physician, right? Wrong. 

As she told her story about the numerous times she went to the dentist, we kept hoping that they decided to take a biopsy of the unusual oral findings—much like a thriller movie audience chanting for a character not to go into a room where the killer is. We were on edge, hoping for a relieving segment of the story. However, when she mentioned that her disease had gotten so severe that her bottom lip came off on her spoon, we sunk in our seats. 

Reading through my notes that night felt different. Bullet points floated from my page and formed constant flashbacks to Becky’s PV story, and for the first time in a while, I had the same feelings I did before starting dental school. In the past, I’ve paid extra attention to information about the autoimmune disease lupus because my mother was the face of it. I found myself feeling the same way about PV because now that had a face too. I value the importance of attaching emotion to diseases by reading about people who suffered from them with the hope that in the future it would trigger my memory as a dentist and lead me to take immediate action during my practice. As our class took our final exam, I can guarantee every student that heard Becky’s presentation read the pemphigus questions and knew the correct answers.  

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Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.

Each week through August and September, we’re featuring a story that highlights a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize they are not alone.

Check out the rest of the Patient Journey Series:

What are Pemphigus and Pemphigoid
Patients
Healthcare Professionals