Stories of NF: Alex S.

Mar 21, 2018, Posted in NF Hero, NF1

Alex was diagnosed with NF1 when he was a couple of months old. He started developing cafe au lait spots and we were sent to Emory Genetics in Atlanta, GA. He had his first MRI when he was 6 months old and it showed the UBOs (unified bright objects); later he developed lisch nodules.


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.


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.


Stories of NF: Zeynep G.

Feb 7, 2018, Posted in NF Hero, NF1

I was diagnosed with NF1 when I was about 6 or 7 years old. I have 3-4 plexiform neurofibromas. I have healed scoliosis (I had surgery as a child). I am a lawyer and I live in Turkey.

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