Rare Disease in the News
Rare disease leaves girl at risk of eating herself to death
A British mother has revealed how she has been forced to seal off her kitchen with garden gates to stop her daughter from gorging until her stomach ruptures. Little Molly Bywater, 5, suffers from Prader-Willi Syndrome, a rare genetic disorder ...
Boy with rare disease inspires family
Doctors finally diagnosed him with a complicated disease that goes by AHUS for short. The ultra-rare disease affecting only one in half a million people, causes the body's immune system to attack blood cells, leaving the waste to clog the kidneys.
Domestic abuse advocate fights rare disease
MILWAUKEE - Renee Schulz-Stangl is a fighter. For decades she's devoted her career to advocating for victims of domestic violence through her leadership of the Personal Development Center, an agency that assists people affected by domestic abuse.
FDA hands out $23M for rare disease development
The FDA says it has granted $23 million in a siloed fund for industry and academic groups to help bolster early- and later-stage research into a host of rare diseases. The U.S. regulator, which awards the grants through its Orphan Products Clinical ...
FDA Distributes $23M Grant for Rare Disease R&D Initiatives
FDA Grants $23 Million for Rare Disease Research
FDA funds $23m for rare disease research grants
Rare disease advocate welcomes statement from UNDP
Rare disease advocate John Forman, has been working on the promotion of a rare disease agenda in public policy here in New Zealand, and internationally, since the late 1990s. He is delighted that UN Development Programme Administrator Helen Clark ...
Teen NFL Superfan with Rare Disease 'Signed' by New Orleans Saints: 'We Love Him!'
The NFL team signed outspoken and adorable Jarrius Robertson, 14, at an honorary ceremony Tuesday on Good Morning America. The die-hard Saints fan has biliary atresia, a rare liver and bile duct disease that affects his physical growth. He is currently ...
New Orleans Saints sign 14-year-old superfan battling rare disease
RDR Sports Report-New Orleans Saints Sign Rare Disease Superfan
Community rallies support for baby with rare disease | ABC10.com
A 6-month-old baby girl is recovering after a successful liver transplant at Stanford Hospital in Palo Alto.
Dr House goes digital as IBM's Watson diagnoses rare diseases ...
Doctors will use Watson as a diagnostic tool after finding it could match symptoms with potential rare diseases as well as a human – but faster.
After children's deaths, Murrieta woman raises awareness of rare disease
Both have lost sons to a rare inherited condition and are raising daughters born with the same genetic defect. Pastorius, 30, is a carrier and De Leon, 57, has full-blown symptoms of an adult onset urea cycle disorder called ornithine transcarbamylase ...
Rare Disease Report
Rare Diseases By The Numbers – October 21st
Rare Disease Report
Number of rare disease New Orleans Saints superfan signed to travel with the team to their next game as their hype-man. 2. Number of siblings that were conjoined and the number of days the separation operation took. 2. Number of tries Teva ...