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Quarterly

The Journal of International Pemphigus & Pemphigoid Foundation ISSUE #104 | SPRING 2021

The IPPF is a US 501(c)(3) nonprofit organization. EIN: 94-3207871

BOARD OF DIRECTORS

Mirella Bucci, PhD, Secretary Sonia Tramel, Treasurer Mert Erogul, MD Carolyn Fota Laurence Gallu Badri Rengarajan, MD Michael Rigas Ramesh Swamy Mindy Unger Staci White

QUARTERLY STAFF

Patrick Dunn, Editor-in-Chief, editor@pemphigus.org Anna Lane, Managing Editor Toby Speed, Copyeditor

CONTRIBUTING WRITERS

David Baron Sharon Radtke Kevin Mead Becky Strong Mei Ling Moore Mindy Zimmerman Rebecca Oling

IPPF STAFF

Patrick Dunn, MFA, Marketing and Communications Director Nelly Filippov, Administrative Manager Carolyn Fota, Peer Health Coach Anna Lane, MSc, Marketing and Communications Manager Kevin Mead, Executive Director 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 Scott Taub, Peer Health Coach Amethyst Yale, Outreach Assistant 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 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: 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

© 2021 International Pemphigus & Pemphigoid Foundation

Printed in the USA by our friends at SUNDANCE PRESS, Tucson, AZ. www.sundancepress.com

Message from the Executive Director

Do things ever get less busy? For any of us? Like many of you, the phrase “when we have spare time” has become a wry motto for the staff, board, and volunteers that drive the IPPF forward.

And so, what do we do when these things all stack up? We have productivity tools, but just like you, we prioritize, combine, and try to work both harder and smarter. We are always trying to expand our reach in support of the goal that “Biopsies Save Lives.” To support this, we try to talk to as many practicing and student medical professionals (doctors, dentists, nurses, hygienists) as we can so that they consider the possibility of pemphigus or pemphigoid as a diagnosis when examining patients. We have had considerable recent success in doing this. Through a partnership with the American Dental Association and Paradigm Medical Communications, Donna Culton MD, PhD; Joel Laudenbach, DMD; and our own Becky Strong, BS, RN (Outreach Director), recently presented a live continuing education course called, “Pemphigus: Know it when you see it.” While this is part of what we regularly do, this time there were almost 3,000 registrants!

In addition to this, staff members Becky Strong and Amethyst Yale (Outreach Assistant), continue to support a higher number of Patient Education Series webinars in 2021 after we increased the frequency of these webinars in response to the COVID-19 pandemic. They are ably supported by Patrick Dunn (Communications and Marketing Director) and Anna Lane (Communications and Marketing Manager) as we also promote the IPPF’s initiatives and successes, echo those of others, and produce compelling content— including this very publication! Meanwhile, Nelly Filippov (Administrative Manager) keeps us all moving forward and regularly steps in to remedy my own administrative and record-keeping shortcomings. And our volunteers—wow! If I were to name a few, I would leave too many out, but suffice it to say that our efforts in peer health coaching, research, advocacy, event planning, and strategic direction benefit enormously from the active participation of volunteers. Related to this, please join me in welcoming three new members to the IPPF Board of Directors: Carolyn Fota, Laurence Gallu, and Michael Rigas. The entire community is looking forward to their contributions in these important roles. In the past quarter, we have heightened our advocacy work to support various federal level legislative efforts that impact quality of life and affordability concerns of patients. As one of the stronger rare disease organizations, we also lend our support to other organizations with similar goals around health access. In the US, Rare Disease Week on Capitol Hill is two months away, and we will be playing our usual prominent role in that. As always, we are looking forward to continuing our efforts to support the pemphigus and pemphigoid community in the months ahead.