The NF Team

11/09/2025

10/17/2025

On World NF1 Breast Cancer Awareness Day, we stand together — 10 organizations united to raise awareness, support research, and honor every person impacted by NF1 and breast cancer.

05/02/2025

This May, NF organizations are standing together - raising awareness, taking action, and fighting for progress for every person affected by neurofibromatosis or schwannomatosis.

From research to advocacy, from support to solutions, we’re united by one mission: to end NF.

Each logo on this graphic represents a group making an impact. Together, we are stronger, louder, and more determined than ever.

Join us. Share. Act. Be part of the movement to end NF.

04/16/2025

NF Meeting 4.15.25.png

Today, leaders from NF organizations across the country joined forces with one shared goal: to protect research, raise awareness, and drive progress for everyone affected by NF.

From all walks of life and every corner of the map, we are working together on a bold plan to ensure NF is seen, understood, and funded.

The federal funding cuts were tough. But we are tougher — and more determined than ever.

You’ll be hearing more from us. This is only the beginning.

03/11/2025

Speaker of the House Mike Johnson has scheduled a vote for this Tuesday, March 11, on a continuing resolution extension bill that includes a devastating 57% cut to the Congressionally Directed Medical Research Programs (CDMRP). This would severely impact federal research funding for NF and many other diseases listed below.
We need your help today and tomorrow to stop this disaster. Contact your member of the House of Representatives and urge them to vote NO on the bill. Here’s how you can take action:
📢 Call, email, and post on social media to make your voice heard.
📍 Find your representative at ziplook.house.gov and click on their page for contact information.
📞 Or call the Capitol switchboard at (202) 224-3121—they can tell you who your representative is and connect you to their office.
🚨 Tell them: A vote for the continuing resolution bill is a vote to slash federally funded medical research. Instead, urge them to approve a full-year FY25 Defense Appropriations Act that fully funds the CDMRP.
📩 Share this message widely! These cuts affect more than just NF research—the bill also threatens funding for:
Alcohol and Substance Use Disorders
Alzheimer's Disease
Amyotrophic Lateral Sclerosis (ALS)
Arthritis
Autism
Bone Marrow Failure
Breast Cancer
Chronic Pain Management
Combat Readiness-Medical
Duchenne Muscular Dystrophy
Epilepsy
Glioblastoma
Gulf War Illness
Hearing Restoration
Joint Warfighter Medical
Kidney Cancer
Lung Cancer
Lupus
Melanoma
Military Burn
Multiple Sclerosis
NEUROFIBROMATOSIS
Neurotoxin Exposure Treatment Parkinson's
Orthotics and Prosthetics Outcomes
Ovarian Cancer
Pancreatic Cancer
Parkinson's Disease
Peer Reviewed Cancer
Peer Reviewed Medical
Peer Reviewed Orthopaedic
Prostate Cancer
Rare Cancers
Reconstructive Transplant Research
Scleroderma
Spinal Cord Injury
Tick-Borne Disease
Toxic Exposures
Traumatic Brain Injury and Psychological Health
Tuberous Sclerosis Complex
Vision

02/13/2025

https://us02web.zoom.us/meeting/register/Wzg0ecaoSrmq3nvyeHMGiw #/registration

Join us to learn about current research on how best to treat pain for people with non-NF2 related schwannomatosis. We'll share information on the latest advancements in schwannomatosis pain research from the lab to the clinic, including information on the tanezumab and STARFISH clinical trials. Vane...

05/04/2021

Today is our second day of informing our supporters about the NF Registry! When you join the NF Registry you have access to the latest discoveries about the many ways living with NF1, NF2, or schwannomatosis can affect individuals and families, which helps you and your family find the best possible care. Now is the perfect time to join! You will have access to:

- Clinical trials and research studies relevant to you or your child
- Updates to NF care recommendations
- Research announcements and news
- Surveys designed to get patient input on key NF challenges
- Educational materials specific to you
- Resources to help you on your path with NF

Take action to stay informed, improve care, and advance NF research. Join the NF Registry today: nfregistry.org

05/03/2021

May is NF Awareness Month, which is the perfect time to join the NF Registry! When you join the NF Registry you have access to the latest discoveries about the many ways living with NF1, NF2, or schwannomatosis can affect individuals and families, which helps you and your family find the best possible care.

You will have access to:
-Clinical trials and research studies relevant to you or your child
-Updates to NF care recommendations
-Research announcements and news
-Surveys designed to get patient input on key NF challenges
-Educational materials specific to you
-Resources to help you on your path with NF

Take action to stay informed, improve care, and advance NF research. Join the NF Registry today: nfregistry.org

05/03/2021

May is NF Awareness Month, which is the perfect time to join the NF Registry! When you join the NF Registry you have access to the latest discoveries about the many ways living with NF1, NF2, or schwannomatosis can affect individuals and families, which helps you and your family find the best possible care.

You will have access to:

-Clinical trials and research studies relevant to you or your child
-Updates to NF care recommendations
-Research announcements and news
-Surveys designed to get patient input on key NF challenges
-Educational materials specific to you
-Resources to help you on your path with NF

Take action to stay informed, improve care, and advance NF research. Join the NF Registry today: nfregistry.org