BIOENGINEER

Rare Disease Patients Tell Researchers Exactly What Digital Health Tools They Need Most

A mixed-methods study of 149 rare disease patients and caregivers identifies centralized health data, telehealth, ...
Medical Daily

Ten Rare Diseases and Bizarre Syndromes That Sound Made Up but Are Real

A study of 1.4 million women links pregnancy complications to later heart, diabetes, and kidney risk. What to tell your doctor at checkups. Tax-exempt hospitals now sell longevity programs from $5,500 ...
Forbes

New $25 Million Accelerator Bets On Better Model For Rare Disease

This voice experience is generated by AI. Learn more. This voice experience is generated by AI. Learn more. A new Pittsburgh-based initiative, Rare Ventures, has launched with a $25 million commitment ...
STAT

My granddaughter has a rare disease. But clinical trials often exclude patients like her

As the grandfather of a girl with a rare disease, I’ve learned that for families like ours, hope often comes not as a cure, but as a clinical trial: carefully designed but inevitably exclusive. My ...
Forbes

This Biotech Lets Rare-Disease Families Invest In Its Gene Therapy

This voice experience is generated by AI. Learn more. This voice experience is generated by AI. Learn more. Mahzi Therapeutics is pioneering a new biotech model by letting patients and families invest ...
eMarketer

Rare disease audiences gravitate toward non-traditional health information sources

The trend: Most rare disease patients feel unsupported while navigating their care, pushing them toward alternative health information sources, according to two recent surveys—one by Morning Consult ...

Top U.S. Health Officials to Address Rare Disease Leaders at 2026 NORD Breakthrough Summit in Washington, D.C.

Three of the nation's leading federal health officials will join more than 900 rare disease leaders across patient advocacy, industry, policy, science and medicine at the 2026 NORD® Rare Diseases and ...