Monday, February 29, 2016, was “Leap Day,” the rarest day of the year. But for the rare disease community, it was much, much more: it was International Rare Disease Day.
The IPPF is proud to join with others in the community to raise awareness of rare diseases. Our board, staff, advisors, and volunteers are motivated every day by a passion to support awareness, advocacy and the development of treatments that can have a meaningful impact for P/P and all rare diseases.
Millions of people took this year’s motto, “The Patient Voice,” to heart and spoke out to the general public and elected officials in more than 80 countries. In the United States, all 50 states passed resolutions recognizing the day as Rare Disease Day. Here in California, Noelle Madsen and I were joined by dozens of rare diseases advocates at the CA State Capitol. Noelle and I were also guests on the State Assembly floor as California Senate Concurrent Resolution 108, Rare Disease Day was unanimously passed (and later we were in the gallery as the State Senate unanimously passed the CSR).
Meanwhile, in the Nation’s Capitol, Marc Yale and fellow P/P patients spoke to their elected officials on the importance of funding rare disease research and legislation. On Wednesday, March 2, our patients joined more than two hundred advocates educating aides, senators, and congress members on the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures & Treatments) that could double the number of treatments available to rare disease patients. The OPEN ACT has the potential to be a game changer for pemphigus and pemphigoid patients and the entire rare disease community.
That evening, NORD and the IPPF educated more than 15,000 people on rare diseases and P/P in 120 seconds. Just before tip-off at the Sacramento Kings/Oklahoma City Thunder NBA game here in Sacramento, I was interviewed by Kings’ emcee Scott Freshour on Rare Disease Day and pemphigus and pemphigoid shown over the court’s jumbotron to the entire stadium. Immediately after that, this video created by our own Patrick Dunn was shown (and played again at halftime).
I encourage everyone to be a self-advocate for P/P and rare diseases in general. A little effort by each of us can have a tremendous impact on patient quality of life. For more information on advocating, contact Marc Yale at firstname.lastname@example.org.
At the California State Capitol. (l-r) Kristen Angell, NORD; Noelle Madsen, IPPF Patient Services Manager; Greg Benton, The Myelin Project; Monique Rivera, IPPF Admin; Debbie Fuentes, IPPF Intern; Will Zrnchik IPPF Executive Director.
At the National Institutes of Health in Washington, D.C. Kate Frantz, IPPF Awareness Program Manager, displays the Awareness Campaign poster to raise awareness for pemphigus and pemphigoid.
At the Sacramento Kings vs Oklahoma City Thunder game in Sacramento, CA. Debbie and Niko, IPPF Student Interns from Cristo Rey High School, help raise awareness for P/P and other rare diseases.
Watch the Rare Disease Day coverage by Sacramento’s FOX40 News.
What makes a disease a rare disease?
What is Rare Disease Day?
Rare Disease Day was established by the European Organisation for Rare Diseases (EURORDIS) and was first observed in Europe in 2008. In 2009, EURORDIS partnered with NORD for this initiative in the U.S. For more information about Rare Disease Day, visit www.rarediseaseday.us or www.rarediseaseday.org.