Quarterly
The Journal of International Pemphigus & Pemphigoid Foundation
ISSUE #113 | Q4 2023 The IPPF is a US 501(c)(3) nonprofit organization. EIN: 94-3207871 BOARD OF DIRECTORS Staci White, Secretary Sonia Tramel, Treasurer David Baron Laurence Gallu Badri Rengarajan, MD Michael Rigas, PharmD Ramesh Swamy Mindy Unger QUARTERLY STAFF Patrick Dunn, Editor-in-Chief, editor@pemphigus.org Anna Lane, Managing Editor Toby Speed, Copyeditor Fred Wish, Copyeditor CONTRIBUTING WRITERS Emily F. Cole MD, MPH Madison Costello Patrick Dunn Renee Haughton Samantha Herbert Olivia Kam Anna Lane Harrison Loftus Michael Rigas, PharmD Janet Segall IPPF STAFF Patrick Dunn, MFA, Executive Director Nelly Filippov, Administrative Manager Anna Lane, MSc, Marketing and Communications Manager Mei Ling Moore, Peer Coach Bryon Scott, Awareness Ambassador Coordinator Janet Segall, Peer Coach Rebecca Strong, Outreach Director Scott Taub, Peer Coach Amethyst Yale, Community Engagement Manager Marc Yale, Research and Advocacy Coordinator INTERNATIONAL PEMPHIGUS & PEMPHIGOID FOUNDATION 915 Highland Pointe Dr, Suite 250, Roseville, CA 95678 Toll free: 855-4PEMPHIGUS tel: 916-922-1298 info@pemphigus.org | www.pemphigus.org The Quarterly is published four times per year in both print and digital formats. The material presented is not intended as medical advice or to promote one product or service over another. Readers should consult their physicians before making changes to their health regimen. The contents of the Quarterly cannot be reproduced or copied without written permission from the IPPF. Inquiries should be directed to: 915 Highland Pointe Dr, Suite 250, Roseville, CA 95678 USA. The opinions of contributors are not necessarily those of the IPPF. Electronic versions of the Quarterly are available at pemphigus. org/quarterly. If you would like to submit a story for consideration, please contact our editors prior to submitting your story: editor@ pemphigus.org © 2023 International Pemphigus & Pemphigoid Foundation Printed in the USA by our friends at SUNDANCE PRESS, Tucson, AZ. www.sundancepress.com
Message from the Executive Director Dear Reader, It’s once again the season when we spend a lot of time thinking about… time. We’re looking back to assess if and how the IPPF achieved its goals for 2023. We’re looking forward to 2024 and beyond, planning how we can best serve this community. We’re also wishing we could simply pause time, even for a moment, to catch our collective breath! I’m sure this is a sentiment that many people reading this letter also share. Today, as I write this, the calendar just flipped to December. As I look back over the past year, I believe the work the IPPF has done can be summed up using the slogan from October’s Patient Education Conference: “Empowering the Patient Voice.” From landmark events, such as our Externally-Led Patient Focused Drug Development meeting held in January for the US FDA, to our annual programming and Patient Education Conference, elevating the voice of pemphigus and pemphigoid patients to a place of prominence is one of the most important things the IPPF can do. But what, exactly, do we mean when we say this? The “patient voice” can be both the literal voice of individual patients, as well as the collective voice—or opinions—of the broader patient community. As the largest pemphigus and pemphigoid (P/P) patient advocacy group in the world, the IPPF is in a unique position to gather the opinions of a significant number of patients. This is especially important when dealing with rare diseases like P/P, where patients in any one area are few and far between. Over time, the IPPF has collected enough information through surveys, patient stories, and direct conversations, that we are able to identify the top concerns of people living with P/P. This information not only helps us create better resources, it also gives us a tremendous amount of credibility among doctors; researchers; pharmaceutical companies and other industry; legislators; and regulatory agencies like the FDA. In the past, organizations like the IPPF had to fight especially hard to be considered partners by such entities. Thankfully, times have changed, and many of these entities now recognize how essential it is to include opinions from patients in their work. However, there is still much to be improved on this front. Because of this, the IPPF spends a lot of time reminding its partners that true progress for patients can only occur when patients are engaged every step of the way. After all, what good is a new treatment if it doesn’t address the things that actually matter to the people living with these diseases? Elevating the patient voice can take on many forms. It’s publishing patient stories in this magazine. It’s inviting patients to give lectures to dental and medical students about their experience. It’s making sure legislators are aware of potential bills that could have dramatic impacts on the health and finances of P/P patients. It’s publishing educational resources that patients can use to become self-advocates. It’s assisting industry partners in recruiting patients to provide feedback in the drug development process before potential new therapies reach the clinical trial stage. Most of all, it’s making sure that improving the quality of life for all people affected by P/P is the reason we take on this work day in and day out. With that as our north star, our direction is true, our path is clear, and time is on our side.
Patrick Dunn, IPPF Executive Director patrick@pemphigus.org
