Raredr

Advocacy

A proposal by the White House in March 2017 to cut the NIH budget by 18% would cripple medical research in the U.S.A. for years to come
In many of situations, the patient often continues to go undiagnosed; fear, helplessness and anxiety often increase; and trust in the healthcare system may be compromised or lost.
Author and YouTube star Lizzie Velasquez is getting her own show on Fullscreen about body image. Lizzie has a rare congenital condition that gives her very unique physical attributes. She led a campaign to stop internet bullying.
In an essay published in Nature Human Behaviour, psychology professor Sander van der Linden of the University of Cambridge provides some insight on why some social causes go viral and others do not.
Lauren Bailey, MS, CGC at Duke University talks about the upcoming patient meeting for Pompe disease being held April 7-8, 2017 at Duke.
Robert Nussbaum, MD describes Lowes Syndrome, a genetic disorder that impacts multiple organs with severe behavioral and physical outcomes.
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).
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