We are launching our Rare Kids on the Town T-Shirt Campaign! We hope you will join us by purchasing a shirt and sending us a photo of you wearing it in the community. (patricia@rarekidsnetwork) Your photo will be posted on [...]
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 [...]
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 [...]
WASHINGTON (ABC7) — At just eight years old, Julia Alexander from Manassas was diagnosed with a rare form of brain cancer. Three years, three major surgeries, eight rounds of chemo, and two months of radiation later – Julia is using her [...]
http://www.wusa9.com/news/health/calebs-chance-va-mom-seeks-help-for-ill-son/501772875 Caleb needs a life saving clinical trial. This young boy from King George, Virginia will be connected to potential resources who may be able to help. Another confirmation our mission is critical!