Quarterly

The Journal of International Pemphigus & Pemphigoid Foundation

ISSUE #99 | WINTER 2020 The IPPF is a U.S. 501(c)(3) nonprofit organization. EIN: 94-3207871 BOARD OF DIRECTORS David Baron, Chairman Mirella Bucci, PhD, Secretary Sonia Tramel, Treasurer Mert Erogul, MD David Sirois, DMD, PhD Ramesh Swamy Debra Tepperman Mindy Unger QUARTERLY STAFF Patrick Dunn, Editor-in-Chief, editor@pemphigus.org Anna Lane, Managing Editor Toby Speed, Copyeditor CONTRIBUTING WRITERS Mandy Alhajj Donna Culton Isobel Davies Carolyn Fota Mei Ling Moore

Becky Strong Shannon von Felden Fred Wish Marc Yale

IPPF STAFF Patrick Dunn, MFA, Marketing and Communications Director Nelly Filippov, Administrative Manager Carolyn Fota, Peer Health Coach Anna Lane, MSc, Communications Assistant Mei Ling Moore, Peer Health Coach Bryon Scott, Awareness Ambassador Coordinator Janet Segall, Peer Health Coach Rudy Soto, Peer Health Coach Rebecca Strong, Outreach Director Amethyst Yale, Outreach Assistant Marc Yale, Executive Director INTERNATIONAL PEMPHIGUS & PEMPHIGOID FOUNDATION 1331 Garden Highway, Suite 100, Sacramento, CA 95833 Toll free: 855-4PEMPHIGUS tel: 916-922-1298 info@pemphigus.org | www.pemphigus.org POSTMASTER: Please send address changes to IPPF, 1331 Garden Highway #100, Sacramento, CA 95833, USA The Quarterly is published four times a year and provided free to donors as a thank you for their support. 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: IPPF, 1331 Garden Hwy #100, Sacramento CA 95833, USA. The opinions of contributors are not necessarily those of the IPPF. We can reproduce articles and provide electronic copies of issues. If you would like to submit a story for consideration, please contact our editors prior to submitting your story: editor@pemphigus.org

Message from the Executive Director As we begin a new year and new decade, I am excited about what the future holds for the IPPF and all those affected by pemphigus and pemphigoid (P/P). As demonstrated in our 2019 Year in Review Infographic, our community made great strides in our main areas of focus: outreach and patient services, research and treatments, awareness, and advocacy. We have made progress but there is still work to be done! By sharing our stories about living with these diseases with doctors, researchers, other disease groups, decision-makers, and one another, our community will continue to grow. P/P are rare diseases, but collectively we have a loud voice. When we band together, our stories will: • Accelerate basic research and drug development through IPPF initiatives that collect vital disease information, like the IPPF Natural History Study and IPPF Biobank • Improve access to life-saving treatments and quality healthcare by advocating with law-makers and regulatory agencies • Create even more disease awareness by educating practicing and future medical professionals • Provide hope and support for each other when they are most-needed In 2020, the IPPF will gather key members of the P/P community to raise disease awareness, advocate for unmet medical needs, and accelerate the path for new treatments. Globally, we must assess the current state of treatments, steroid burdens, the role of clinical research, and our ability to overcome treatment barriers. To meet these challenges, we need everyone in our community to participate. You can make a difference by letting us know how we can help you, pledging to join a study that advances research, or sharing your story with policy makers. Although there are many obstacles ahead, we can improve the lives of all those affected by pemphigus and pemphigoid! Together we are going to make 2020 a milestone year!

Marc Yale IPPF Executive Director and MMP Patient marc@pemphigus.org

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