News/Blog

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New Study Results on Pain and Patients with Neurofibromatosis Type 1

Posted By Diana Haberkamp | On August 28th, 2019

Frank Buono PhD, from the Department of Psychiatry at Yale School of Medicine and longtime member and supporter of NF…

Golf Charity Open

Posted By Karissa Haberkamp | On August 9th, 2019

We are excited to have our inaugural golf fundraising event hosted by Ravinia Green Country Club on Monday, September 9,…

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Sign Up for a Resiliency Study on NF

Posted By NF Midwest | On July 24th, 2019

Massachusetts General Hospital is looking for adults with NF1, NF2, or Schwannomatosis to participate in a research study to enhance…

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Evita – A Face of NF

Posted By Diana Haberkamp | On May 31st, 2019

My name is Evita Ali and I have NF1. I was diagnosed with neurofibromatosis when I was 30 years of…

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New Website Connects NF Patients with Doctors

Posted By Diana Haberkamp | On May 30th, 2019

NF Collective Launches New Website to Connect NF Patients with Doctors The NF Collective, a group of organizations dedicated to…

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Shad – A Face of NF

Posted By NF Midwest | On May 29th, 2019

I joined the Army at 19 years old. I did all the training and arrived at my duty station. In…

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Silas – A Face of NF

Posted By NF Midwest | On May 29th, 2019

My sixteen-year-old son began getting café au lait spots at two months old. Our pediatrician at the time gave us…

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Sarah- A Face of NF

Posted By NF Midwest | On May 27th, 2019

My STRONG and POSITIVE Sarah was born with NF1. Sarah has had 12 surgeries, 14 chemo sessions, 58 MRI’s, and…

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RJ – A Face of NF

Posted By NF Midwest | On May 26th, 2019

We had moved from a quiet neighborhood to a go, go, go city which meant switching all our providers. When…

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Ben – A Face of NF

Posted By NF Midwest | On May 26th, 2019

My name is Ben. I’m graduating high school next week and heading to college this fall. Neurofibromatosis type 1 was…

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