CDM Rare Selects RKN For Pro Bono Marketing/Branding services.

We are excited to announce Rare Kids Network has been selected by CDM Rare, a division of Omnicom Health Group in New York City for pro bono marketing and branding services. CDM is very excited about our mission and they are passionate about assisting organizations within the "rare" space. Omnicom Health Group is the largest [...]

2019-07-21T21:25:59+00:00

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