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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.

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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.

New Webinar Series: Ask the Expert

Jan 8, 2018, Posted in Latest News, NF1, NF2, Schwannomatosis, Science, Video

We at CTF understand that not everyone living with NF is able to be seen by an NF expert on a regular basis or attend NF Forums, symposiums, or conference. With that in mind we are excited to bring you this webinar series!

10 Steps Forward in NF Research 2017

Your ongoing support has allowed us to take huge steps forward in 2017 in the fight against NF. Your efforts and contributions have been instrumental in advancing neurofibromatosis research, providing hope for the millions worldwide who live with NF, and bringing us ever closer to our shared goal of ending NF forever.

First Synodos Network Meeting Hosted by CTF

Earlier this month, more than 70 researchers, clinicians, patients, staff, and other experts gathered in Palm Beach, Florida for the first Synodos Network Meeting, hosted by the Children’s Tumor Foundation.

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