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An IPPF News Site

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Foundation


  • What to Expect at Our Annual Patient Conference

    This year’s conference promises to be one of our best yet as we are highlighting the most recent research advances in the fields of pemphigus and pemphigoid. Dr. Aimee Payne, a dermatologist at the University of Pennsylvania, will be our keynote speaker on Thursday night at the Annual Awards Dinner where she will share her ...

  • A Letter from Marc Yale, Our New Executive Director

    While working as a Peer Health Coach, I’ve had the pleasure of speaking with many P/P patients. Creating those relationships has been so gratifying. I have also built and expanded programs that serve our community, and I’ve represented the organization at conferences, meetings, and in the halls of Congress. So far, my time with the ...

  • Missing Out On “Free” Money?

    Over $10 billion in employer matching donations go unclaimed each year. The IPPF donation page allows you to search and see if your employer has a matching donation program.

More Foundation . . .

Support & Education


  • Engineering the Immune System to Correct its Own Flaws: a Q&A with Dr. Aimee Payne

    “This exciting aspect is why CAR-T cells were named by the director of the NIH and Vice President Joe Biden as part of the ‘moonshot’ to cure cancer – the word “cure” is potentially within our reach with this technology.”

  • Be Strong Enough to Take Care of Your Loved One

    You have heard this message time and time again: It’s important for family caregivers to take care of their own health so they can stay strong enough to take care of their loved ones! But as a family caregiver, it’s difficult to find the time because caregiving takes so much work and energy. Being a ...

  • Pemphigus, Pemphigoid, and Social Security Disability

    If you cannot work enough to earn the SSA’s monthly Substantial Gainful Activity (SGA) limit of $1,130, then you may be eligible for Social Security Disability Insurance (SSDI). Generally, you need to have worked five of the last ten years in a job that pays into Social Security, and additional years depending on your age.

More Support & Education . . .

Awareness


  • The Long Road: A Pemphigoid Patient’s Journey to Diagnosis

    Sharon Williamson’s journey to a pemphigoid diagnosis started in July of 2014 when her mouth began to bleed whenever she brushed her teeth. Like many undiagnosed P/P patients, Sharon first shared her symptoms with her dentist. This dentist did not recognize Sharon’s symptoms and told her to floss more frequently.

  • IPPF Awareness Campaign Receives Continued Funding from Sy Syms Foundation

    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 Campaign. This will be the fourth consecutive year the Sy Syms Foundation has supported the Campaign.

  • The Challenges of Dental Implants in P/P Patients

    The biggest problem with dental implants in pemphigus and pemphigoid (P/P) patients is that P/P are often treated with corticosteroids or other immune suppressants for prolonged periods of time.

More Awareness . . .

Advocacy


  • Why Advocacy?

    Since its inception, the IPPF has had a strong commitment to advocacy. Our goal has been to promote favorable government policies to create awareness and accelerate the pace of scientific discovery for pemphigus and pemphigoid.

  • Join the IPPF to Ensure the Rare Disease Community is Heard This Summer

    During the summer recess, Congress returns to their home states to hear from constituents and attend community events. Meeting with them during this time is a critical opportunity for rare disease advocates to build relationships, educate them on key legislative needs, and follow-up on requests made during Rare Disease Week on Capitol Hill or phone ...

  • Speak Up, Stand Up, Write Up, and Talk Up

    When there was an opportunity to be an advocate, Marc suggested that I attend Rare Disease Week in Washington, DC. My first reaction was FEAR. The walking, my body aching, standing were just a few of my worries. EXCITEMENT was the next emotion. There would be stories that I could relate to and new people ...

More Advocacy . . .