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Sections

Foundation


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Support & Education


  • Self-Care: Comfort Techniques and Dressings

    Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

  • Rituxan Receives FDA Approval to Treat Pemphigus Vulgaris

    On Thursday, June 7th, the FDA approved Rituxan for the treatment of adults with moderate to severe pemphigus vulgaris (PV). Rituxan is the first biologic therapy approved by the FDA for PV and the first major advancement in the treatment of PV in more than 60 years.

  • Syntimmune Announces Positive Preliminary Results from Clinical Proof-of-Concept Trial of SYNT001 in Pemphigus Vulgaris and Foliaceus

    Syntimmune recently announced positive preliminary results from its phase 1b proof-of-concept trial of SYNT001 in pemphigus vulgaris and foliaceus patients. It’s exciting for the IPPF to share good news related to research and treatments. The full press release from Syntimmune can be found here. The following is an excerpt:   Syntimmune, Inc., a clinical-stage biotechnology company developing ...

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Awareness


  • Advocating for Dental Research

    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.

  • Dental Student Awareness: Boston University

    It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor ...

  • Awareness Campaign Becomes a Program

    It started with a vision to make more people aware of pemphigus and pemphigoid (P/P). Those following the IPPF Awareness Campaign may know it was designed as a three-year initiative with January 2017 as a tentative end date. Well, January has come and gone, and the Awareness Campaign—or should I say, Program—is here to stay. ...

More Awareness . . .

Advocacy


  • Advocating for Dental Research

    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.

  • In-District Lobby Days

    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 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 ...

More Advocacy . . .