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 ...
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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.
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.
What Is Hantavirus, the Rare Disease That Killed Betsy Arakawa?
Ms. Arakawa, the wife of the actor Gene Hackman, died from the effects of a disease often caused by contact with droppings ...
What is PolG? The rare genetic disease that ended a young prince's life
Prince Frederik of Luxembourg died from a genetic disease called PolG, but experts hope his passing could bring more ...
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 ...
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.
Polar Plunge in honor of Staten Islander with rare skin disease planned for this month
STATEN ISLAND, N.Y. — A fundraising Polar Plunge to honor John Hudson Dilgen will take place this month in South Beach to ...
Genetic analysis explains rare disease severity, points to possible treatment
Researchers at Washington University School of Medicine in St. Louis have uncovered why some patients with a rare genetic ...
Florida Politics1d
Adam Anderson’s ‘Sunshine Genetics Act’ advances, offering promise for rare disease research and treatment
Ensuring every newborn has access to life-saving screening and treatment is both a moral and economic imperative.' ...
Unlocking Answers: Transforming Rare Disease Diagnosis
Our goals are to expand access to genomic testing and develop cutting-edge genomic testing to help more families get answers ...
Fierce Pharma6d
With blood and growth disorder bids panning out, Novo Nordisk plots path to rare disease leadership: exec
Still, Novo is steadfast in its goal to eventually become a leader in the space, the company’s EVP of rare disease, Ludovic ...