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 our social media and you will be entered in a drawing for a special prize. [...]
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 only a small benefit: Treated children with the disease progeria were more likely than others [...]
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 the RARE Act (HR 5115) on World Rare Disease Day. It is an effort to [...]
Raise awareness and show someone rare that you care! https://www.youtube.com/watch?v=MRC9KNbxzD8&feature=youtu.be
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 diagnosis to help others as one of five ambassadors of the St. Baldrick’s Foundation. Julia joined [...]
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!
Young boy with Hereditary Angioedema faces challenges to obtain life saving medications. RKN has connected the mother with the hereditary angioedema association to quickly provide a solution. Parents fight for their son