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Advocacy

47-year-old BethAnn Telford will run 7 marathons on 7 continents in 7 days. In 2005, she was diagnosed with brain cancer.
Tomorrow, January 18th, is AHC day. AHC or alternating hemiplegia of childhood, is a devastating neurological disease caused by a mutation in the gene ATP1A3.
Syringomyelia is a disease that is identified when a syrinx also termed cyst forms inside the spinal cord.
Bridge the Gap – SYNGAP Education and Research Foundation has launched the largest-ever study to research SYNGAP1.
The International Pemphigus and Pemphigoid Foundation (IPPF) announced it plans to award 4-8 one-year grants in 2017 with values ranging from $25,000 to $50,000
Perlara PBC, is one of those great rare disease, ‘think outside the box’ success stories.
Cure CMD talks about the major problems of fundraising in the rare disease space.
The First International SYNGAP1 Conference began the process to close the gap of time between discovery research and clinical impact.
Magnetic resonance imaging (MRI) is a crucial diagnostic tool for men, women, and children with a diagnosis of Syringomyelia, Syringobulbia, Chiari Malformation, Scoliosis, and additional related pathology.
Rita Francisco talks with Pf David Cassiman, a respected and admired professional among the CDG community
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