An IPPF News Site
Genentech announced this week that positive top line results from the Roche-sponsored Phase III PEMPHIX study evaluating the efficacy and safety of Rituxan® (rituximab) compared to mycophenolate mofetil (MMF) in adults with moderate to severe pemphigus vulgaris
NORD and Trio Health Publish New Book to Provide Critical Patient Insights Into the Burden of Living With and Treating Rare Diseases
As a NORD IAMRARE™ Registry Partner, the IPPF is proud to share that a new book, “The Power of Patients: Informing Our Understanding of Rare Diseases” was published today by the National Organization for Rare Disorders, Inc. (NORD) and Trio Health.
Akari Therapeutics Announces Positive Initial Phase II Clinical Data in Orphan Skin Disease Bullous Pemphigoid
On April 23, 2019, Akari Therapeutics, Plc (Nasdaq: AKTX), a biopharmaceutical company focused on innovative therapeutics to treat orphan autoimmune and inflammatory diseases where the complement and/or leukotriene systems are implicated, announced positive initial Phase II clinical data from the first three of bullous pemphigoid (BP) patients in an ongoing clinical trial.
The IPPF is excited to announce that Ellen Levine, IPPF Patient Educator and pemphigus vulgaris (PV) patient, received the Harvard Medical School Dean’s Community Service Award for her work with the IPPF.
The Sy Syms Foundation has awarded a $100,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Biopsies Save Live Campaign.
The Sy Syms Foundation has awarded a $75,000 grant to the International Pemphigus & Pemphigoid Foundation (IPPF) in support of the IPPF’s Early Diagnosis Awareness Program. This will be the sixth consecutive year the Sy Syms Foundation has supported the Program.
The IPPF had the pleasure of interviewing Lindsey Horan, AADR’s Assistant Director of Government Affairs about their 2018 Advocacy Day and important legislative issues.
For the past four years, I have joined IPPF patients and others in the rare disease community across the country in advocating to congressional members in my district. The IPPF is joining forces again this year with Rare Disease Legislative Advocates (RDLA) for In-District Lobby Days from August 7, 2017 through September 6, 2017.
Rare Disease Day is a day of unity for us patients with rare diseases. I can’t speak for you, but I felt very alone and isolated when I found out I had pemphigus vulgaris. Then I found community in the IPPF. It was very comforting to know there were others out there who had gone ...