An IPPF News Site
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 ...
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 ...
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.
“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.”
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 ...
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.
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.
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 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.
In addition to our general request for NIH funding, I stressed the importance of cutting edge research on rare diseases and emphasized the significance of the Open Act, which incentivizes pharmaceutical companies to make treatments available off-label.
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.
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 ...