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Advocacy

Brandon Hudgins is an American middle-distance runner. In 2016 he tried out for the Olympics after overcoming 3 episodes of vasculitis.
There is an open debate on the diagnosis and types of the Arnold-Chiari Syndrome (ACHS), joined by the discussion about its treatment and that of the frequently associated idiopathic Syringomyelia (ISM).
Jasmine Lellock ran a marathon to honor her mother, Patti, who passed away from an autoimmune disease called neuromyelitis optica (NMO).
Our home was modified to accommodate the needs of Alternating Hemiplegia of Childhood. AHC will never be welcome, but there are appreciated attributes of it.
Project Alive debuted a documentary series to recognize MPS. Each episode will provide a glimpse into the lives of families dealing with Hunter syndrome.
This Mother’s Day, Rare Disease Report wants to honor a few moms that are changing the way that rare diseases are being managed
The Sickkids Foundation has made a powerful video to commemorate mother’s day and the many mothers who bravely care for their hospitalized sick children.
The Mauli Ola Foundation (MOF) are a team surfers who help cystic fibrosis patients breathe better. And it is based on solid scientific evidence.
Fibromuscular Dysplasia (FMD) is a rare disease in which abnormal cell development in the artery wall.
May is EDS Awareness month. EDS is a group of connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility.
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