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Advocacy

A total of 87 organizations, including many rare disease advocacy groups, have sent a letter to Congress asking them to protect Medicaid.
Tim Boyd and Paul Melmeyer from NORD's policy team were on Facebook Live earlier today. Tim and Paul talked for over 50 minutes about various policy issues relevant to the rare disease community, including the Affordable Care Act, and its proposed replacement, the American Health Care Act.
Accelerating patient access to promising new medicines is one of the areas of focus of the European Union (EU).
On Sunday, April 2, 2017, the 16th Annual Comedy for a Cure will be held at The Globe Theatre at Universal Studios Hollywood.
Austin Letcher of CoRDS (Coordination of Rare Diseases at Sanford) talks about the importance of Rare Disease Day.
We talked with Brendan Locke who is caring for his wife, Mellisa, who was diagnosed with Sarcoma in January 2016. In the past year, Melissa has undergone a plethora of treatments and is still looking for a cure.
Dean Suhr of the MLD Foundation and a staple within the rare disease community talks about a new platform they developed to help non-profit organizations share relevant policy issues with their constituents.
Axis Advocacy went to Washington, DC to ask for help of those with sickle cell in need of more treatment options.
Dave Esposito, father of a child with Sanfilippo syndrome, wants the FDA and the pharmaceutical industry to know that their definition of a good outcome measure is different than a parent's definition.
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