St. Louis Families Unite for Rare Disease Day 2026; Take Part Foundation Advances Critical Genetic Testing and Research

St. Louis Families Unite for Rare Disease Day 2026 as Take Part Foundation Advances Critical Genetic Testing and ...

Desperate LI dad begs for funding as 5-year-old son battles extremely rare genetic disorder

I thought the hardest part of this journey would be to find a cure and a treatment for my son,” Andrew Jedlicka told The Post ...

Tuesday's daily dose: FDA fast-tracks rare disease treatments and cancer genetic tests have limits

FDA moves to help those with rare diseases, think twice before at-home genetic testing and a little-known eating disorder ...

Massachusetts to join research study screening newborns for more than 450 genetic diseases

During the Boston Globe’s Rare Disease Summit, Dr. Wendy Chung, a physician-scientist and geneticist who leads the Department ...

People with rare genetic conditions are ‘systematically ignored’ by NHS

Exclusive: One in four wait at least three years for diagnosis and many face treatment ‘access lottery’, according to report ...

Rare genetic variant protects against malaria-causing parasite by making red blood cells bigger

Scientists have found that a special component in some people's blood provides them with natural protection against malaria. A recent study has demonstrated that a genetic variant named rs112233623-T ...

FDA proposes new system for approving customized drugs and therapies for rare diseases

Federal health officials on Monday laid out a proposal to spur development of customized treatments for patients with hard-to ...
FOX 2 Detroit on MSN

'I'm going to lose him': Michigan mother works to raise awareness as son endures late stages of rare disease

A mother from Belleville hopes to raise awareness about Lafora body disease, an ultra-rare disease her son is battling that ...

FDA moves to facilitate personalized therapies for rare diseases

The Food and Drug Administration is making it possible for pharmaceutical companies to produce bespoke medicines for individual patients, an effort to revolutionize the standard of care for rare ...
Asianet Newsable on MSN

Are rare diseases always genetic? Myths, facts & what families should know

The definition of a “rare” disease is based on how often they occur in the population not by whether or not there is a ...
University at Buffalo

Media Advisory: “Diagnose Earlier, Treat Smarter” is focus of UB’s annual Rare Disease Day for providers, patients and community partners

UB will will host its annual Rare Disease Day event from 1-5 p.m. on Friday, Feb. 27, in the Jacobs School of Medicine and Biomedical Sciences, 955 Main St., Buffalo.