Action Alert: Patient Support Needed for Letter to Centers for Medicare and Medicaid Services (CMS)

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FOUNDATION LEADERS: Please consider adding your organization to a letter we will be sending to the Centers for Medicare and Medicaid Services (CMS) next week, encouraging the agency to revise its proposed rule on Medicaid “line extension” rebates and exclude orphan drugs from the scope […]

TheHuntingtonsPost.org – The First Newspaper for Huntington’s Disease

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Organization: The Huntington’s Post Submitted by: MELISSA BILIARDI The Huntington’s Post is the first online newspaper FOR the Huntington’s community ABOUT the Huntington’s community and BY the Huntington’s community. Visit often, as we are continually updating articles for the latest news about events, research and clinical […]

Are You a Blogger? Join our Blog Hop for RARE disease!

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We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE Disease Day. What is a blog hop? A blog hop is when bloggers write about a common theme/topic […]

European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients

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ECRD 2010 – From Policies to Effective Services for Patients – was the occasion to discuss strategic issues for the rare disease community