Message from the Executive Director

Dear reader,

Welcome to the first Quarterly of 2023! Here at the IPPF, our year is off to a great (and busy) start. In the following pages, you’ll find reports and articles about many of our recent achievements, as well as some reflection on the past year’s programmatic efforts. Some of this information, such as our 2022 Year-in-Review, reflects the ways in which the IPPF staff shows up every day to support our community. In other articles, you can read about how years of work can culminate in major milestones for pemphigus and pemphigoid (P/P) patients. This is especially the case for our Externally-Led Patient Focused Drug Development (EL-PFDD) meeting, held in January. This event resulted in dozens of P/P patients sharing their stories in front of the US FDA and other key interest leaders. It was a truly successful initiative, and a unique global collaboration between the IPPF (based in the US); PEM Friends (based in the UK); Association Pemphigus & Pemphigoïde France; and the Pemphigus/Pemphigoid Friends Association (based in Japan). Perhaps most importantly, our EL-PFDD meeting was a major step in our community’s ongoing elevation of the patient voice.

In this issue of the Quarterly , you will also find articles on how the IPPF collaborates with other organizations and professionals to broaden the reach of our patient advocacy and support efforts. It is certainly true that in the rare disease world, there is strength in numbers. These collaborations serve to amplify the patient voice among the medical professionals who can make a correct diagnosis and the decisionmakers working on new treatments.

As we look forward to the rest of 2023, I’m excited to see how these initiatives will come together in support of people affected by P/P. Of course, none of this would be possible without the support of people like you. Whether you’re a patient yourself, a caregiver or friend of a patient, a medical professional, or an industry partner, the IPPF continues to thrive because of your engagement.

Thank you,

Patrick Dunn, IPPF Executive Director patrick@pemphigus.org