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Stories of NF: Kellee F.

Mar 7, 2018, Posted in NF Hero, NF1

I was 16 years old when I was diagnosed with NF1, following a series of doctor appointments over the course of four years because of chronic headaches. My father was diagnosed before I was born and now I was being diagnosed with it.

Rare Disease Day at the NIH

Mar 2, 2018, Posted in Collaborations, Science, Synodos

By Salvatore La Rosa

On Feb 29, 2008, EURORDIS, a European rare disease organization, sponsored the first Rare Disease Day in Europe. Then the United States joined the first global observance the following year, along with 23 other countries. This year I was invited to participate at the Rare Disease Day at the National Institutes of Health (NIH), an event that aims to bring together “Patients and Researchers – Partners for Life,” as their slogan has always been.

Accelerating NF Research Thru Technology

Feb 28, 2018, Posted in Latest News, NF Hero, NF2, Science

By Onno Faber

Rare Disease Day is recognized every year on the on the last day of February. It’s a time for the entire rare disease community to come together to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. Neurofibromatosis affects 1 in 3,000 people overall; NF2 is even more rare (1 in 25,000) and schwannomatosis even more rare (1 in 40,000). 

We asked NF2 patient Onno Faber to tell us about his journey to a diagnosis and how he leveraged his experience as a Silicon Valley technology entrepreneur to accelerate rare disease research & drug development.

Stories of NF: Eli D.

Feb 22, 2018, Posted in NF Hero, NF2

Eli was diagnosed with an eye condition called PHPV as an infant, which resulted in a detached retina at 12 months of age. Later, at age 5, he was diagnosed with NF2.

Children’s Tumor Foundation Receives 4-Star Rating from Charity Navigator 9th Year in a Row

Feb 21, 2018, Posted in Latest News

The Children's Tumor Foundation is excited to announce that it has once again been honored with a 4-star rating from Charity Navigator, America's largest and most-utilized independent evaluator of philanthropies.