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!

CLICK HERE 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. 

CLICK HERE to 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.

CLICK HERE for family & patient resources.

CLICK HERE if you are a new patient/family and would like to receive our newsletters and other updates.

For Researchers

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

CLICK HERE for information on NF 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.

CLICK HERE for ways to 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.

CLICK HERE for all news and events.

Latest News & Events

NF Community Chat – Holiday Edition!

Thursday, December 15th – NF patients and their families are invited to join us at 7pm for a festive, community-building virtual chat! These chats are fantastic opportunities to meet others who are affected by NF and have casual conversations about the day-to-day concerns and questions that may arise.

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NF2 Schwannoma Research Study

NF Northeast is funding a new study, led by Dr. Bradley Welling, which hopes to explore possible treatments for NF2-associated schwannomas by testing the effect of direct injection of tumors with doxycycline, a commonly used antibiotic. Dr. Welling is currently searching for more participants for his study.

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NF Awareness Month

NF Awareness Month

Avery Rausch, a certified yoga instructor living with NF2, shares his yoga practice with the NF Young Adult Community as part of May NF Awareness Month.

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Endurance Events

Runners celebrate finishing the Falmouth Road Race! We are excited about our endurance event offerings including Hike for NF and the Philadelphia Marathon.

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