Feb. 26, 2013
TOPIC: Patients & Members
Posted at February 26, 2013 9:27 pm
This year’s theme for Rare Disease Day is “Rare Disorders Without Borders.” It shows that rare diseases are a global issue, and if we work together in solidarity, we can create a better world for patients. Recently, we asked individuals on the Rare Disease Day US Facebook page what “Rare Disorders Without Borders” meant to them and we were really touched by some of the answers. read more >
Feb. 21, 2013
Posted at February 21, 2013 4:25 pm
Feb. 14, 2013
TOPIC: Featured News, Patients & Members
Posted at February 14, 2013 6:40 pm
My name is Debbie Richardson, and I was diagnosed in 1994 with Stiff Person Syndrome (SPS), following four years of progressive symptoms. SPS is a rare autoimmune neurological disorder with an incidence of about 1 in 1,000,000, world-wide. read more >
Feb. 06, 2013
Posted at February 6, 2013 2:35 pm
The fourth annual Raise Your Hand campaign launched this week, and it’s already creating a social media buzz. This campaign, sponsored by Lundbeck, raises awareness and support for rare disease research. It also gives a spark of hope to patients previously left on the sidelines in the quest for a treatment. read more >
Jan. 19, 2013
Posted at January 19, 2013 10:58 pm
Reprinted with permission from FDA Matters: By Steven Grossman
The Orphan Drug Act (ODA) turned 30 this month, demonstrating that good laws really can have an enduring impact. Amidst the celebrations, a reporter asked me a provocative question: Can we afford more orphan drugs costing hundreds of thousands of dollars per year? FDA Matters answered “yes”. read more >
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