We are rare, we are many, we are strong, we are proud! The purpose of Rare Disease Day® is to harness...
The IPPF is thrilled to share that Hannah Yale won the 2021 RareVoice award for State Advocacy by a Teenager, which...
We're excited to share that last month, the IPPF's Marc Yale was named as President of the Board of Directors of...
On April 8, 2021, IPPF Advocacy & Research Coordinator, Marc Yale, issued a statement during the Medicaid and CHIP Payment and...
On February 8, 2021, the US Food and Drug Administration (FDA) held a Listening Session with patients representing the International Pemphigus...
The IPPF has published a white paper focusing on the urgent needs of pemphigus patients.
We are rare, we are many, we are strong, we are proud! The purpose of Rare Disease Day® is to harness...
You may be aware of the IPPF’s advocacy efforts. Now, we need you to advocate, too. Your story is important and...
The IPPF had the pleasure of interviewing Lindsey Horan, AADR’s Assistant Director of Government Affairs about their 2018 Advocacy Day and...
For the past four years, I have joined IPPF patients and others in the rare disease community across the country in...
Rare Disease Day is a day of unity for us patients with rare diseases. I can’t speak for you, but I...
Although there has been a huge public outcry over the cost of prescription drugs, there has been little public discussion about...
In addition to our general request for NIH funding, I stressed the importance of cutting edge research on rare diseases and...
Since its inception, the IPPF has had a strong commitment to advocacy. Our goal has been to promote favorable government policies...
During the summer recess, Congress returns to their home states to hear from constituents and attend community events. Meeting with them...
When there was an opportunity to be an advocate, Marc suggested that I attend Rare Disease Week in Washington, DC. My...
As we shared our stories on behalf of the entire P/P community, I could see that many of the legislators’ offices...
The purpose of advocating in Washington, DC is to spread awareness and lobby for favorable legislation that affects the entire IPPF...
Monday, February 29, 2016, was "Leap Day," the rarest day of the year. But for the rare disease community, it was...
In November 2014, I used the chemotherapy drug Rituxan off-label for my rare disease, Immune Thrombocytopenia (ITP). The decision was made...