43 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

What We Do
“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
Get Involved
“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
Learn
“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
Events
“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
News/Blog
“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
Support

Research Trials and Studies

Highlighted Research Trials and Studies

Go to CLINICALTRIALS.GOV for a more comprehenisive list of ongoing studies and trials.

Research Studies and Trials

NF1 Research Studies and Trials

Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients.

Stanford Ophthalmology, Children's hospital of Philadelphia and Gilbert Family Foundation | 2024

This study is seeking to learn how different eye tests and devices can…

Johns Hopkins Various Clinical Trials

Johns Hopkins Comprehensive NF Center

Researchers at Johns Hopkins and around the world are investigating ways to slow…

My NF Guide Study RECRUITING!

Massachusetts's General Hospital | 2024

If you or your child has NF1, and you don't go to an…

Neural Underpinnings of Attention in Children with NF1

University of Wisconsin-Milwaukee | 2023
By Dr. Bonnie Klein-Tasman

Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study-RECRUITING NOW.

Dana-Farber/Boston Children's | 2024

The Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study will determine whether a…

NF1 Market Research Study until Feb 25, 2025

MarketVision Research

VIEW FLYER PDF

CLOSED:

Research Study To Understand Barriers To NF1 Care

Mass General Brigham | 2023

We want to learn more about your experiences looking for NF1 medical information…

Topical Gel study for Adults with NF1 & cNFs

NFlection Therapeutics | 2023

Phase two trial is done. A phase three trial may open soon. Latest…

Developing Novel Biomarkers of Plexiform Neurofibroma Tumor Burden in NF1

Ann & Robert H. Luries Childrens Hospital of Chicago | 2023
By Carlos Prada, MD

Recruiting NF1 individuals with known Plexiform Neurofibromas

CLOSED:

Natural History of Cutaneous Neurofibromas in people with NF1

John Hopkins Medicine | 2023
By Carlos Romo, MD

Children and teens 19 years and younger.Adults 40 years and over.

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

University of Wisconsin-Milwaukee | 2021
By Bonnie Klein-Tasman, PhD

NF2 Research Studies and Trials

Efficacy and Safety of REC-2282 in Patients With Progressive Neurofibromatosis Type 2 (NF2) Mutated Meningiomas (POPLAR-NF2)

Recursion Pharmaceuticals Inc.

This is a parallel-group, two-staged, Phase 2/3, randomized, multi-center study to investigate the…

Johns Hopkins Various Clinical Trials

Johns Hopkins Comprehensive NF Center

Researchers at Johns Hopkins and around the world are investigating ways to slow…

NF2 SWN Clinical Trials (RECORDING)

2024 NF Midwest iNFO Fair | 2024
By Vanessa Merker, PhD

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

SWN Research Studies and Trials

Johns Hopkins Various Clinical Trials

Johns Hopkins Comprehensive NF Center

Researchers at Johns Hopkins and around the world are investigating ways to slow…

Resilient Youth Study (age 12-17 NF or SWN)

Massachusetts General Hospital/Harvard | 2022
By Julie Brewer

Participating in Research

Observational Research (RECORDING)

2024 NF Midwest iNFo Fair | 2024
By Vanessa Merker, PhD

People Are Talking

Thank you very much [for the packet]! My 6 year old son was diagnosed with NF last fall. My 8 month old will have his first appointment at the NF clinic in July. We are very excited about the walk. We just finished a T-shirt fundraiser. I had never even heard of NF before he was diagnosed, so NF Midwest has been a wonderful resource for us. Thank you for all that you guys do!

- Jessica

Find NF Care

Get the best care! Find an experienced NF doctor/clinic in the NF Midwest region.

Be iNFormed

Knowledge is power! Learn and understand as much as possible about neurofibromatosis.

Community Support

Don’t fight alone! Meet others in the NF community to learn and share experiences.

Donate

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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

Research Trials and Studies

Research Studies and Trials

NF1 Research Studies and Trials

Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients.

Johns Hopkins Various Clinical Trials

My NF Guide Study RECRUITING!

Neural Underpinnings of Attention in Children with NF1

Neurofibromatosis Type 1 Tumor Early Detection (NF1-TED) study-RECRUITING NOW.

NF1 Market Research Study until Feb 25, 2025

Research Study To Understand Barriers To NF1 Care

Topical Gel study for Adults with NF1 & cNFs

Developing Novel Biomarkers of Plexiform Neurofibroma Tumor Burden in NF1

Natural History of Cutaneous Neurofibromas in people with NF1

Resilient Youth Study (age 12-17 NF or SWN)

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

NF2 Research Studies and Trials

Efficacy and Safety of REC-2282 in Patients With Progressive Neurofibromatosis Type 2 (NF2) Mutated Meningiomas (POPLAR-NF2)

Johns Hopkins Various Clinical Trials

NF2 SWN Clinical Trials (RECORDING)

Resilient Youth Study (age 12-17 NF or SWN)

SWN Research Studies and Trials

Johns Hopkins Various Clinical Trials

Resilient Youth Study (age 12-17 NF or SWN)

Participating in Research

Observational Research (RECORDING)

People Are Talking

Find NF Care

Be iNFormed

Community Support

Get the Latest NF News & Updates