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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 [...]

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 [...]

Rare Disease Day is February 28, 2018

Raise awareness and show someone rare that you care! https://www.youtube.com/watch?v=MRC9KNbxzD8&feature=youtu.be

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 [...]

Batten Disease Threatening Local Boy

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!

Challenges to Obtain Life Saving Medications

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