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More Moms Advocating for Rare Diseases: Monica Weldon, Debra Miller, and Lisa Schill
All mothers of children with rare diseases fight to advocate for their children. In honor of Mother’s Day, we recognize 3 such women: Monica Weldon, Debra Miller, and Lisa Schill.
Myositis is a rare autoimmune disease affecting an estimated 50,000 – 75,000 Americans
Grants ranging from $150,000 to $500,000 are being made available from the FDA's Office of Orphan Products Development (OOPD) Natural History Grants Program.
We will work with your clinic to set up a program to suit your needs, this can be on a case-by-case basis, as a package of kits to give out or by hosting a mass sequencing event.
The International Pemphigus & Pemphigoid Foundation (IPPF) is a nonprofit organization dedicated to improving the lives of people with pemphigus and pemphigoid through early diagnosis and support
Here are the stories of three rare disease moms: Christine McSherry of the Jett Foundation, Melissa Hogan of Saving Case & Friends, and Jill Wood of Jonah’s Just Begun.
Tristan West, mother of a child with a rare undiagnosed condition talks about the struggles and frustrations associated with not being able to know what the problem is to begin with.
We are working to spread the message that the science is on our side, and that what happened at AdComm is representative of a process problem within FDA.
A study recently published in Orphanet Journal of Rare Diseases underscores how little is known about the symptom of fatigue in Gaucher disease.
Matthew Harms, MD, of Columbia University talks about his precision medicine project focusing on neuromuscular diseases, such as limb girdle muscular dystrophy, Duchenne muscular dystrophy, and amyotrophic lateral sclerosis.
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