Life-saving treatments for children with orphan illnesses often move slowly, if at all, through the federal approval process.
Their child has lived with the rare disease since birth, and now they're turning that experience into a message for other families. WALB's Brittanye Blake has their story.
More than 100 children with rare diseases and their parents participated in a special Patient Support Group Program organised ...
Every year, thousands of parents hear the heart-wrenching news that their child has been diagnosed with a rare disease, news that upends their world. Rare diseases do not discriminate, claiming ...
Torie Bosch is the First Opinion editor at STAT. Celena Lozano’s son Benny, who turned 5 in November, loves trains, trucks — anything that goes. He also has a rare disease, PURA syndrome. Earlier this ...
QUINCY, Ill. (WGEM/Gray News) - The Kempf family says they have received devastating news about their children when it comes to a rare disease. Both of their children have been diagnosed with ...
Everyone’s favorite little blue pill may offer more than just a boost in the bedroom. New research suggests the erectile ...
Stecker is a rare disease mother and advocate and served as assistant secretary of public affairs and deputy chief of staff at the Department of Health and Human Services. Every parent dreams of a ...
Registration has opened for the online "Run for Kids with Rare Diseases" charity race, allowing participants to raise funds ...
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