TOPIC: Advocacy, Patients & Members
Katie Thortenson of Chicago is a proud mother of two healthy sons: her eldest, Jake, is 6, and her youngest, Drew, is 2, but often mistaken to be younger. When people ask why he’s so small, Katie explains… Read More
TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members, Research
On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. Read More
TOPIC: Advocacy
National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative “Call to Action”
The National Organization for Rare Disorders (NORD) has submitted comments to the Congressional 21st Century Cures initiative outlining nine steps to promote the development of treatments and cures for the 30 million Americans with rare diseases. Read More
TOPIC: Advocacy
Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday before the U.S. House Energy and Commerce Health Subcommittee on advancing the development of treatments for Americans with unmet medical needs. (more…)
TOPIC: Advocacy, Featured News
NORD recently hosted a Capitol Hill briefing on the topic “Rare Diseases in a Changing Healthcare Landscape”. Keeping our elected officials informed and aware is a critically important, and this briefing… Read More
