NF Registry
If you or your child has been diagnosed with neurofibromatosis (NF) please join the NF Registry today. The key to treatments lies within you – researchers can’t deliver treatments without committed volunteers.
Sponsored by the Children’s Tumor Foundation, the NF Registry’s mission is to identify people with NF who are interested in participating in clinical trials, as well as determining the commonality of specific characteristics of neurofibromatosis. The NF Registry is committed to secure methodologies and pioneering research that will lead to improving the health and well-being of individuals and families affected by NF.
Even if you don’t want to participate in clinical trials, sharing your information on this registry will help advance our knowledge of neurofibromatosis.
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I was suspected of NF at around 4 years of age. I have CP. I could not walk. I spent the first six years of my life in braces or casts. At six the surgeries started. I had 26 by the age of 12. They amputated at 12 1/2. I also have NF1. Have had several tumors removed from the skin as well as internally. My daughter was diagnosed with NF at 11 years. She passed from MPNST/lung cancer at 29.