Rare Disease Week A REFLECTION AND LOOK FORWARD Fred Wish
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ast year, I was fortunate enough to take part in Rare Disease Week on Capitol Hill, a gathering of hundreds of patients, caregivers, researchers, and other people from all over the United States who share an interest in shaping healthcare policy. Participants spent an entire week learning about healthcare and funding issues affecting the rare disease community, the legislative process, and how citizen advocates can present their stories in ways that are more likely to hold the attention of legislators and staff members. One of the first things I learned at Rare Disease Week was that the term rare disease is a misnomer of sorts. By definition, any condition affecting fewer than 200,000 people in the United States is considered a rare disease. There are an estimated 7,000 rare diseases, and the total number of patients in the United States is estimated at 25 to 30 million. When you add the number of caregivers, researchers, and practitioners who deal with these diseases, one out of every seven or eight Americans are a part of the rare disease community. Taken in that light, we’re hardly rare at all. As a pemphigus vulgaris (PV) patient, I was aware of the work the IPPF had been doing to raise awareness and advocate for more research and treatment funding. However, I was not aware that a whole group of similar organizations, along with university medical research departments, had teamed up with Rare Disease Legislative Advocates (RDLA, a program of the EveryLife Foundation for Rare Diseases), to encourage our senators and members of Congress to support efforts to address the challenges of rare diseases. Rare Disease Week on Capitol Hill is one of the primary ways that RDLA draws the national legislature’s attention to those challenges.
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