42 Years of Care and Ensuring No One Fights Alone!

Participants Wanted for cNF Natural History Study

Cutaneous neurofibromas also known as cNF are common among those with neurofibromatosis Type 1 (NF1). These begin tumor skin tumors can cause irritation and embarrassment to those who have them. Researchers at John Hopkins have been studying how cNF develop, grow and change over time. Knowing such information can help researchers’ discovery new ways to treat and mange cNF.

Participants of this exciting study will be seen yearly at John Hopkins in Baltimore once a year for five years. At the first visit participants can expect to be asked to provide a salvia sample that will identify the type of NF1 gene mutation. They will also have a skin exam and a whole-body 3D imagining. Participants will then be asked to complete yearly surveys to help researchers track symptoms.

A $50 gift card will be provided at the first visit. Participants traveling from outside the state of Maryland may be eligible for $700 in travel reimbursement.

In addition to contributing to medical research to better understand cNF participants will have access to new 3D camera technology that is not normally offered elsewhere.

To enroll or for more information please reach out to study coordinator Amanda Johnson at or call 410-502-7546.

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