Tag: rare disease day


9 Patient Leaders You Should Follow This Rare Disease Day

A disease is considered rare when it affects fewer than 200,000 people. Yet, 1 in 20 individuals will experience a rare disease in their lifetime. Many who have a rare disease often go undiagnosed or misdiagnosed for years, sometimes even decades. And when individuals do finally receive a proper diagnosis, it can be difficult to…

Rare Disease Day: Importance of Fundraising and Research

For some 30 million Americans living with a rare disease is part of everyday life. Many individuals suffering from a rare disease go to sleep and wake up with the same understanding and outlook of the disease as they did the day before, or even years before - there is no reprieve. In the United…
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