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 ...
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.
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 ...
Florida Politics2d
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 ...
Former Florida Football Player Uses NFL Pro Day to Raise Funds for Rare Diseases
Former Florida Gators DL Joey Slackman is using his NFL Pro Day to raise money for a cause close to his heart.
Med Device Online2d
A Look At AI-Driven Medtech For Rare Disease Diagnosis
Recent advances in AI, including machine learning, natural language processing, and deep learning models, are transforming ...
Fierce Pharma13d
Arrowhead, Zevra fire up campaigns for Rare Disease Day 2025
Zevra used the awareness day to roll out the “Learn NPC, Read Between the Signs” disease awareness campaign. The biotech won ...
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 ...