Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face. About TherachonTherachon is a global biotechnology company focused on developing medicines for rare, genetic diseases that currently have no available treatments. BASEL, Switzerland--(BUSINESS WIRE)--Therachon AG, a biotechnology company focused on rare genetic diseases, has joined forces with health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, the largest and leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases. For more information about Rare Disease Day go to http://www.rarediseaseday.org/.
Trump's Joint Address to Congress to Include Special Rare Disease Guest – Megan Crowley
Our daughter was born with craniosynostosis, a rare disease where 2 of the bone plates surrounding her brain were fused together. Megan Crowley is a 20-year-old sophomore student at University of Notre Dame who was diagnosed with Pompe disease when she was 15 months old. She blogs about her extraordinary life at highheeledwheels.com Megan is the daughter of John Crowley, CEO of Amicus Therapeutics. Latest ArticlesOn Rare Disease Day, Congressman Gus Bilirakis (R-Florida 12th District ) introduced the Orphan Product Extensions Now Accelerating Cures and Treatments Act, or the OPEN Act (H.R. 1223), to help open the door to potentially hundreds of new treatments for rare diseases.collected by :Lucy William
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