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.
