Launching our Rare Kids on the Town T-Shirt Campaign

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. [...]

2019-06-07T00:38:17+00:00

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 only a small benefit: Treated children with the disease progeria were more likely than others [...]

2019-05-04T22:45:35+00:00

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 the RARE Act (HR 5115) on World Rare Disease Day. It is an effort to [...]

2018-03-12T10:24:28+00:00

Local Girl with Rare Brain Tumor Chosen as St. Baldrick’s Ambassador

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 [...]

2019-04-08T18:53:50+00:00