Mission: To educate, unite andempower business professionals, researchers, physicians and – most importantly– those affected by rare diseases so that they can initiate change.
Programs: The Global ScienceJournalism Network for Rare Diseases (GSJN) helps researchers andothers working with rare diseases communicate their needs more widely, while atthe same time preparing a future generation of science journalists more capableof writing about rare diseases.
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CheckOrphan gave me access to the news and information that I needed for my disease. Not only did the disease page have a disease description, but it also contained news articles to a company that was working on a cure. I also found research publications that had information about researchers and physicians doing work with the disease, although I did not understand the information, I knew to contact the people for more information.
I am very grateful that they make so much information available. Very comprehensive