Twin brothers with rare genetic disorder inspire statewide fundraising campaign: Full court for a cure

The nonprofit is funding research at two universities—Oregon Health & Science University and UMass Chan Medical School—on a ...

Learning I had a rare genetic condition changed how I saw myself as a physician, woman and mom

Bethany Oeming has often fielded questions from people wondering what the secret was to her muscular body. At 36, when she ...

Couple donates $11 million to Lurie Children’s Hospital to support work in genetics and rare diseases

The donation from Don and Anne Edwards aims to speed research, treatment and diagnosis for children with rare and genetic ...

Kennedy approves adding two rare disorders to newborn screenings

U.S. Health Secretary Robert F. Kennedy Jr. on Tuesday added two rare genetic disorders, Duchenne Muscular Dystrophy and ...

Gene editing superstars team up to make cheaper rare disease cures

Gene editing has the potential to cure thousands of people suffering from devastating rare diseases. But the Nobel Prize-winning technology faces a basic math problem: It’s not profitable to spend ...

Wilson’s disease: A rare genetic disorder where copper accumulation can lead to neurological dysfunction

Wilson’s disease is an autosomal recessive disorder caused by ATP7B mutations, leading to copper accumulation in the liver, ...
Crain's Chicago Business

Philanthropists give $11 million for Lurie Children's rare genetic disease program

Don and Anne Edwards have donated $11 million to Ann & Robert H. Lurie Children's Hospital to establish what will be the ...

Lurie's Children's Hospital receives $11M gift to expand care for rare diseases

Chicago's Lurie's Children's Hospital will expand care for patients living with rare genetic diseases and conditions thanks ...

Lurie Children's to expand research in fight against rare genetic diseases thanks to $11M donation

Lurie Children's Hospital officially announced an expansion of research with the $11 million from Don and Anne Edwards, who ...

Rare genetic disorder linked to liver damage, low blood sugar and fat loss

A rare genetic disorder discovered by UT Southwestern Medical Center researchers and their colleagues can cause brain damage ...

Mother of Lakeland toddler with rare genetic disorder hopes intensive therapy could help her son

This holiday season, a Lakeland family is wishing to go to North Carolina. It is not for a vacation, but instead an intensive ...
Rolling Out

The rare genetic mutation that prevents wrinkles

Meet the luckiest people on Earth — individuals carrying a rare genetic mutation that prevents wrinkles from forming even as they age well into their 80s. These genetic lottery winners have provided ...