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. 

A cross-sectional study of the International Pemphigus and Pemphigoid Foundation

April 5, 2021
This past summer and early fall, we asked our patient community to participate in a survey regarding the effects that the ongoing COVID-19 pandemic have had on their lives. We’re happy to report that the results of that survey led to a publication in ​​​the Journal of The European Academy of Dermatology and Venereology this month: “COVID-19 Pandemic and Autoimmune Bullous Diseases: a Cross-Sectional Study of the International Pemphigus and Pemphigoid Foundation”.

We are especially grateful to the 372 pemphigus and pemphigoid patients who completed our USC / IPPF COVID-19 Impact Survey.

The objective of this study as outlined in the article was “to investigate the associations of outdoor activity restriction, income loss and treatment non-adherence with self-reported outcomes and to determine the satisfaction level with teledermatology platforms in patients with autoimmune bullous diseases (AIBDs) during the COVID-19 pandemic.” Access the article, including the study data and conclusions, here

The IPPF has published a white paper focusing on the urgent needs of pemphigus patients.

March 16, 2021
The IPPF is excited to announce the publication of a white paper, “Elevating Awareness of the Pressing Needs of the Pemphigus Community.”  This paper is in response to the results of a Patient Forum held as part of our Virtual Patient Education Conference last October. The Patient Forum was sponsored by Principia Biopharma, a Sanofi Company, and brought together pemphigus patients, caregivers, patient influencers, healthcare professionals, thought leaders, and advocates to discuss the most important disease-related topics affecting the pemphigus community. The white paper discusses the consensus reached by the speakers and panelists related to the most urgent needs of pemphigus patients. It also includes decisive calls to action. 

During the Patient Forum, panelists discussed their experiences with delayed diagnoses and the physical, mental, and financial impact of pemphigus. The consequences of a delayed diagnosis to a patient’s health and well-being can be significant, therefore the speed and accuracy of diagnosis must be improved. Speakers discussed the high dosage use of corticosteroids and limited treatment options for pemphigus, which makes it clear that new treatment options are needed. In response to the need for new treatments, scientists in academia and the biopharmaceutical industry are currently working to refine and expand treatment options that are more tolerable and targeted. 

Based on the urgent needs discussed during the Patient Forum, the panelists and speakers agreed on the following calls to action: 

  1. Elevate awareness of pemphigus and the patient journey and perspective among key audiences, including clinicians, thought leaders, government agencies, and lawmakers, among others.
  2. Increase awareness of ongoing clinical trials of promising investigational candidates to improve participation in trials, with the goal of developing more effective and well tolerated treatments for pemphigus.
  3. Improve affordability of and access to therapies.

The white paper provides an in-depth analysis of the challenges facing pemphigus patients during both diagnosis and treatment. 

As a NORD IAMRARE™ Registry Partner, the IPPF is proud to share that a new book, The Power of Patients: Informing Our Understanding of Rare Diseases was published today by the National Organization for Rare Disorders, Inc. (NORD) and Trio Health. The book features natural history data collected from the IPPF, a member of NORD’s IAMRARE registry community.

The Natural History Study is an online data system that collects, stores, and retrieves patient data for analysis in research studies. It is designed to help the medical and research community understand illness trends, treatment outcomes, disease burden, and some important demographic information about patient age and gender.

By sharing stories, celebrating community-driven teamwork, and exhibiting data from the registry community, The Power of Patients illustrates the promise and potential of natural history studies and highlights the vital importance of patient participation.

“At NORD, our priority is to create real change and accelerate progress for the rare disease community. By working at the intersection of research, policy, and education, we demonstrate the power and possibility of patient-reported, real-world evidence,” said Peter L. Saltonstall, President and CEO of NORD. “Created in collaboration with Trio Health, The Power of Patients amplifies the experiences of individuals and families living with rare diseases, and demonstrates the importance of registries and natural history data in helping to shape the way the rare disease landscape is navigated by patients and their physicians.”

Continue reading the full press release to learn more about the new book and the stories and data collected.