Today, when a child is diagnosed with 4H Leukodystrophy, a rare genetic neurological disease, doctors tell their parents that there are no therapies available and,… Continue reading The Yaya Foundation for 4h Leukodystrophy
Results for "light up for rare"
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I’ve got a rare disease . It’s rare because after 7 years, 5 neurologists and so many tests/ scans it still hasn’t got a name,… Continue reading The 7 Year Mystery
Shaping Foundations was founded by four empathetic high school students—Anirudh Koneru, Pooja Shah, Cayla Xue, and Liesha Yenduri—who first learned about rare diseases at Woodbridge… Continue reading Shaping Foundations
Meet my son Anthony, he was diagnosed with Neuronal Ceroid Lipofuscinosis Type 7, also known as Batten Disease. Batten Disease is a rare, terminal genetic… Continue reading Living with Batten Disease: Anthony’s Story
Sapiens, as a center for genetic diagnostics, has a mission of contributing to the diagnosis, follow-up and treatment of all genetic disorders, especially rare diseases,… Continue reading Sapiens Genetics
Share content from Rare Disease Day.org. We had hoped to go to the event, but didn’t get a scholarship, so we will share what we… Continue reading The Mast Cell Disease Society (f/k/a The Mastocytosis Society)
Campaign program We organized this event to improve overall knowledge about the rare diseases highlighting spinal muscle atrophy (SMA) in Egypt. Our target audience will… Continue reading Mansoura University – Faculty of Medicine
We support patients and their families around the world affected by complex lymphatic anomalies (CLAs): generalized lymphatic anomalies (formerly known as lymphangiomatosis), kaposiform lymphangiomatosis, Gorham-Stout… Continue reading LGDA
Hypersomnolence Australia (HA) is a registered non-profit health promotion charity. Our primary purpose is to support the medical community work towards a better understanding of,… Continue reading Hypersomnolence Australia