News2019-07-08T15:00:54+00:00

Rare Kids Network & Children’s National: Helping Kids w/Rare Disease (NBC 4)

Watch the interview from News4 Your Sunday here: https://www.nbcwashington.com/contact-us/community/News4-Your-Sunday-Helping-Kids-With-Rare-Diseases_Washington-DC-559760142.html?fbclid=IwAR1ihL5rkLym11yh0W3XSXNJxgpF_l3prHyusJR0rz3ZRP_L7j4FD5y0yJI

Kids with rare rapid-aging disease get hope from study drug

CHICAGO — Children with a rare, incurable disease that causes rapid aging and early death may live longer if treated with an experimental drug first developed for cancer patients, a study suggests. The small, preliminary study isn't proof the drug works and it found [...]

Proposed RARE Act Seeks to Address Common Challenges Rare Disease Patients Face

Two Congressmen have introduced the Rare Disease Advancement, Research, and Education (RARE) Act, a bipartisan bill that seeks to address common challenges faced by rare disease patients and their families. Rep. André Carson, D-Indiana, and Rep. Ryan Costello (R-PA) introduced [...]