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The 3.5m people with rare diseases who face worsening treatment and diagnosis rates
Rare diseases affect one in 17 people in the UK, but a Government initiative designed to improve their quality of life will ...
Mother with rare ALS touts 'miracle drug' that has stopped her disease
Raziel Green, 52, an active runner and mother of two, was diagnosed with a rare form of ALS in 2017. Since starting a clinical trial nearly eight years ago, her symptoms have not gotten any worse.
American Council on Science and Health4d
“Rare” but Not Uncommon: The Hidden Crisis of Rare Diseases
Rare diseases - a medical condition so obscure that even your doctor has to Google. Despite their name, these diseases ...
My son’s rare disease diagnosis spurred me to ditch Big Pharma for a biotech startup
Most individuals diagnosed with a rare disease won’t live to become teenagers or adults. I knew what I had to do.
Threat to son's treatment for rare disease 'agony'
A mother has spoken about her "painful" experience over the potential end to her son's life-enhancing treatment for a rare ...
Live Science on MSN5d
POLG diseases: Rare genetic conditions that starve cells of energy and afflicted the late Prince of Luxembourg
POLG-related diseases disrupt the function of the mitochondria, or "powerhouses" of the cell — starving them of energy.
Prince Frederik of Luxembourg dies from rare disease
Prince Frederik of Luxembourg, the youngest son of Prince Robert of Luxembourg and Princess Julie of Nassau, has died after a ...
A Young Prince of Luxembourg Dies of a Rare Genetic Disease
Prince Frederik, 22, was a founder and the creative director of a foundation that raised awareness of POLG disorder.
FSU's Rare Disease Day spotlights promising research for families
Rare Disease Day provided a forum for university and state leaders to lay out the future plans and share the work already ...
First responders continue to help young girl with rare disease collecting patches to decorate hospital room
ROCKY HILL, Conn. (WFSB) - First responders continue to meet the request for a young girl with a rare disease. Earlier this ...
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Diagnosing rare diseases could soon get much simpler
Impilo's prototype platform scours medical records to pinpoint symptoms of unusual illnesses that are often overlooked by ...
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Shanghai exhibition welcomes artwork from rare disease patients, including expats
At an event announcing the launch of the exhibition, Zhai Jin, a patient with osteogenesis imperfecta, a genetic bone ...