An FD Warrior’s experience at Rare Disease Week!
Advocacy News Foundation NewsEvery year, during the week of Rare Disease Day, FD/MAS advocates and rare disease advocates from other communities gather on Capitol Hill in Washington. These advocates use this time to encourage lawmakers to support legislation that helps the rare disease community including advocating for NIH research funding. This year, FD Warrior Brittany Anderson was among […]
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FDF to Represent the Rare Disease Patient Voice at Congressional Briefing on Rare Disease
Advocacy News Foundation NewsFibrous dysplasia and McCune-Albright syndrome (FD/MAS) will once again be on the minds of lawmakers at this year’s Rare Disease Week on Capitol Hill. The Congressional Rare Disease Caucus is hosting a briefing for lawmakers and the general public on the state of rare disease. FDF’s Executive Director, Deanna Portero, will present at this briefing […]
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Fibrous Dysplasia Foundation’s Rare Disease Day Wrap Up
Advocacy News Foundation NewsFebruary 28th, 2017 we celebrated International Rare Disease Day, an annual awareness day dedicated to elevating public understanding of rare diseases. This year’s theme was “research,” and the Fibrous Dysplasia Foundation (FDF) participated by raising money for FD/MAS research and gathering patient stories in the scientifically designed Patient Registry. The FDF also participated in Rare Disease […]
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