Rare Disease Day at NIH, Set for March 1, Growing Year by Year
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a...
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable...
Cure SMA to Open Series of Career Panel Webinars on Feb. 16
Beginning next month, Cure SMA will offer a three-part Career Panel Webinar Series tailored to the spinal muscular atrophy (SMA) community in the United States. The series, sponsored by Biogen, opens Feb. 16 at 7 p.m. EST. The hourlong event will include a...HCP — SMA News Today
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