NF Northeast is the organization that helps patients through their Journey of Hope.

Photo of Girl blowing on dandelion

A diagnosis of NF1, NF2-related schwannomatosis, or schwannomatosis can happen to anyone at any age and at any time.

Our Vision: A world where the burden of neurofibromatosis does not exist.

Our Mission: To bring hope to those affected by neurofibromatosis and allied disorders.

What is NF?

Neurofibromatosis, pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. NF affects all races, all ethnic groups and both sexes equally. NF affects more people worldwide than cystic fibrosis and muscular dystrophy combined!

For more information on NF →

Who We Are

NF Northeast is a highly regarded resource for patients, physicians and scientists. We have provided over $3 million in research grants, and through our advocacy, have been pivotal in generating over $600 million in federally funded NF research. We are known as the “organization with the heart” because ours is a strong and caring community that provides support to newly diagnosed patients and their families. 

Learn about NF Northeast →

For Patients & Families

Being faced with a diagnosis of NF can be extremely overwhelming. NF Northeast has created programs and resources to help patients and families cope with the challenges that come with NF. Our approach is simple: Science, Solutions, Support. We hope that you will find comfort in knowing that NF Northeast is with you every step of the way.

For more on family & patient resources →

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For Researchers

NF Northeast is committed to advancing biomedical research in fields relevant to neurofibromatosis and has been funding research proposals since 1990. To date, we have granted close to $3,000,000 to fund proposals from researchers or institutions both within and outside of the northeast United States. Fields of research include basic science, translational, and applied clinical trials.

Discover our research programs →

How to Get Involved

There are a  number of ways to support the patients, families, researchers and others looking to fulfill our mission of hope and progress. Donations; community networks; fundraising campaigns; third-party events; creating awareness; community outreach and many more.

Find out how you can support our mission →

News & Events

NF Northeast is involved with numerous events every year involving hundreds of volunteers, families, organizational sponsors, and other supporters. We raise awareness, provide opportunities for positive action and raise funds that support our many goals, programs and research. In addition, we strive to let you know about important news and progress that give hope to our entire community.

News and Events →

Image of lake surrounded by fall foliage with title "Hike for NF 2023: Never Stop Climbing"

Hike for NF 2023: Don’t Stop Climbing

September 30th – NF Northeast is excited to partner with REI for our second annual fundraising hike to climb for a cause! Join us on Saturday, Sept 30th to explore the Rainbow Falls hike within the beautiful Minnewaska State Park in Kerhonkson, NY.

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image of runners leaving the start line at the Maine Marathon with "2023 Maine Marathon" overlay title

2023 Maine Marathon

October 1st – NF Northeast is offering a limited number of bibs for the 2023 Maine Marathon! Run the full marathon, half marathon, or a full marathon relay on a lovely fall weekend in Portland, ME.

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NF Northeast Newsletter on newspaper background

NF Newsletter

Find the most recent copies of our NF News newsletter, which feature community highlights, organizational updates, upcoming events, and more!!

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graphic with image of 4 different speakers for Tuesday Takeaways series

Tuesday Takeaways Fall Speaker Series

A four-part lunch & learn speaker series with one-hour educational sessions geared towards learning about updates and relevant information for our NF community—each session takes place one Tuesday of each month Sept – Dec.

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Why Walk?

An ongoing series that highlights those who have registered or walked with us before and their reason(s) behind joining our Steps2Cure NF walks across the northeast!

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