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Hyperinsulinism, Patient Stories, The Rare Disease Day 2014 Video | CHI
Hyperinsulinism, Patient Stories, The Rare Disease Day 2014 VideoMarch 3, 2014by Julie Raskin | 0 comments Rianna Sommers, Senior at Muhlenberg College and Congenital Hyperinsulinism International Intern, produced a short documentary film, Hyperinsulinism, Patient Stories, with messages from childre...
New Jersey State House Event: Rare Diseases and the Life Cycle « Rare Disease Day USA
Rare New Jersey will present an hour of learning and discussion, Rare Diseases and the Life Cycle, at the State House in New Jersey on March 3 in Committee Room 4 of the Annex Building from noon-1 p.m. This event is in honor of Rare Disease Day, a global, annual event that draws attention to rare di...
NORD Calls Proposed Repeal of Orphan Drug Tax Credit “Anti-Patient and Anti-Public Health” |...
More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax Credit (ODTC). The deadline to sign on is cob Friday, March 7. NORD will send the letter to the House Ways and Mean...
If there’s a family member, friend or medical professional who’s always been there for you, you can show your appreciation by posting a quote, image, video or other message of thanks by using this...
Handprints Across America 2014 « Rare Disease Day USA
NORD - National Organization for Rare Disorders
The Orphan Drug Tax Credit is threatened. Representative Dave Camp, Chairman of the House Ways and Means Committee, has proposed the repeal of this critical incentive. The Orphan Drug Tax Credit, which allows drug manufacturers to claim a tax credit of up to 50% of certain research costs for orphan…
Adventures of an Advocate: Annette De Bow’s Big Journeys | Rare Disease Dialog Blog
Six months after her daughter Evan Claire was born in 2008, Annette De Bow, 48, of Davis, CA was diagnosed with polycythemia vera (PV), one of a closely related group of rare and progressive blood cancers called myeloproliferative neoplasms (MPNs).
Setbacks don't stop Iditarod musher Abbott from chasing dream | Iditarod Sled Dog Race | ADN.com
She is blind in one eye and losing vision in the other, but California's Cindy Abbott -- who scratched last year with a broken pelvis -- has no problem seeing herself becoming the first woman in the world to finish the Iditarod and summit Mount Everest. She's done the mountain; now she needs to make...
Raptor Scholarship Fund
Scholarship awardees will receive financial assistance to enroll in post-high school education, including accredited 2- or 4-year colleges and vocational-technical schools.