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Foundation


  • IPPF 2016 Year in Review

    The IPPF had another great year in 2016. Here are a few highlights:

  • International Pemphigus & Pemphigoid Foundation Announces Research Grant Program

    The International Pemphigus and Pemphigoid Foundation (IPPF) is pleased to announce the availability of a seed grant program to encourage and support patient-oriented research of pemphigus and pemphigoid. The intent of these grants is to support well-defined research projects that have a specified benefit for improving the treatment, health, disease management, or diagnosis of persons ...

  • Where Does My IPPF Donation Go?

    The IPPF appreciates the generosity of each and every dollar we receive, and we allocate donated funds in a responsible manner. After all, your generosity allows us to carry out our mission of improving the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.

More Foundation . . .

Support & Education


  • Resilience

    You don’t have to be a Navy SEAL, firefighter, or an NFL football player to be resilient. Resilience is a common trait that you can build upon by developing certain skills. Research has shown that while some people are naturally more resilient, these behaviors can also be learned. Here are some techniques to foster your ...

  • Surgery and Pemphigus Foliaceus: Joe’s Story

    Having a rare autoimmune disease is scary. Once you receive a diagnosis by a dermatologist experienced in treating pemphigus, it’s advisable to have all of your doctors communicate with your dermatologist (Internist, OB-GYN, Dentist, Orthopedist and other specialists).

  • The Importance of a WHOLEistic Point of View in Your Health

    In a disease such as Pemphigoid, where the cause and pathogenesis is unclear and treatments are often trial-and-error, any “leg up” in dealing with the condition in my opinion should be enthusiastically explored.

More Support & Education . . .

Awareness


  • 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. ...

  • IPPF Patient Educators by the Numbers: 2014-2016

    The end of the year is a great time to look back at our programs and assess the progress we’ve made toward reducing diagnostic delays of pemphigus and pemphigoid. Our patient educators continued to reach more and more dental students at schools across the country.

More Awareness . . .

Advocacy


  • 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 ...

  • Rare Disease Patients Need 21st Century Cures Now

    Although there has been a huge public outcry over the cost of prescription drugs, there has been little public discussion about the need for innovation for patients who don’t yet have an effective therapy. It is estimated that 1 in 10 Americans suffer from a rare disease, and only 5% of rare diseases have a ...

More Advocacy . . .