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Alpha-1 Foundation supports Rare Disease Day Feb. 28
MIAMI – The Alpha-1 Foundation has joined fellow patient advocacy groups to support Feb. 28 as Rare Disease Day. The event draws attention to the importance of rare diseases and health conditions – often overlooked because each one affects a relatively small number of people.
“We are delighted to be a partner in this international effort,” said Alpha-1 Foundation President & CEO John Walsh. “It will help us in our long-standing campaign to identify the many undiagnosed people with Alpha-1 Antitrypsin Deficiency.”
A vital part of marking Rare Disease Day is sharing the stories of real people dealing with these conditions. The Alpha-1 Foundation welcomes these stories, and the Foundation’s “Alpha Stories” shares the experiences of many Alphas and their families .
In the United States, a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in 10 Americans are affected by a rare disease.
