Dr Ratna Devi, CEO, DakshamA Health; Director, PAIR (Patient Academy for Innovation and Research); and Steering Committee ...

With more than 10,000 rare diseases identified, the challenges faced by patients and their families are vast, diverse, and ...

Emilia said. And at every stop along the way, they will talk to anyone and everyone and spread awareness of NF1. “You can’t fix anything until you know what it is,” Sarah said.

Feb. 12, 2025 – The FDA has approved a new pill for a rare genetic disorder called neurofibromatosis type 1 (NF1). It is for adults and children ages 2 and older who have nerve tumors ...

Nick, the son of team owner Dan Gilbert, died at age 26 due to complications from NF1, a genetic condition that causes tumors to grow along your nerves. All proceeds from Bow Tie Night will go to ...

The event helps to raise awareness for neurofibromatosis, a group of genetic disorders which cause tumors to grow on nerves in the body. The run, which is around 1 mile long, will start at 2 p.m ...