Patient Journey Series, Story 2: Rudy Connects with the IPPF. “My Peer Health Coach became a special person that I was able to count on. She offered words of encouragement and let me know I was not alone—she would be with me on my journey to reach remission.”PemPress & PemPress Education)
Welcome to the Patient Journey Series: Story 1, Halima’s Diagnosis. “My symptoms started at the beginning of April 2018. My mouth was inflamed, and I had painful blisters on both sides that made it very difficult to eat or drink. I had no idea what was causing my symptoms, and I went to four different doctors.”PemPress & PemPress Education)
On October 12, 2018, I participated in the IPPF Dental Day as part of the 2018 Patient Education Conference. Dental Day was hosted at the UNC Adams School of Dentistry by Drs. Donna Culton and Ricardo Padilla. As a dental student, I found this to be by far the most exciting and enriching experience of my dental school education to date.Blog & PemPress & PemPress Awareness)
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.PemPress & PemPress Awareness)
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.
NORD and Trio Health Publish New Book to Provide Critical Patient Insights Into the Burden of Living With and Treating Rare Diseases03 Jun 2019 (Blog & PemPress & PemPress Education)
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 Pemphigoid23 May 2019 (PemPress & PemPress Education)
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.PemPress & PemPress Education)
On March 15, 2019, Roche announced that the European Commission has approved MabThera® (rituximab) for the treatment of adults with moderate to severe pemphigus vulgaris (PV), a rare condition characterised by progressive painful blistering of the skin and/or mucous membranes. Extensive blistering can lead to serious, life-threatening fluid loss, infection and/or death.
Principia Biopharma Announces Positive Data From Phase 2 Pemphigus Vulgaris Trial at 2019 American Academy of Dermatology Annual Meeting in Late-Breaking Presentation04 Mar 2019 (PemPress & PemPress Education)
On March 2, 2019, Principia Biopharma Inc. (Nasdaq: PRNB), a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology, today announced Phase 2 clinical data from the Believe-PV study for PRN1008 as part of the Late-breaking Research: Clinical Trials program at the American Academy of Dermatology (AAD) annual meeting in Washington D.C.
Principia Biopharma Announces the Acceptance of Data from Phase 2 Pemphigus Vulgaris Trial as a Late-Breaking Presentation at 2019 American Academy of Dermatology Meeting25 Feb 2019 (PemPress & PemPress Education)
On February 22, 2019, Principia Biopharma Inc. (Nasdaq: PRNB), a late-stage biopharmaceutical company dedicated to bringing transformative oral therapies to patients with significant unmet medical needs in immunology and oncology, announced that an abstract has been accepted for oral presentation at the Late-Breaking Research during the 2019 American Academy of Dermatology annual meeting in Washington, D.C.