To move our knowledge of NF forward many people are needed to participate in research.
There are many ways to participate in neurofibromatosis research. Some may be more invasive such as a clinical trial testing a medication. Some may simply involve answering questions or letting a researcher examine you and follow your case. Some research may provide the benefit of extra care and expertise and may provide vital testing such as MRIs at no cost to the patient. All research advances our understanding of neurofibromatosis to lead to better treatments, more knowledge of how a patient may be affected, and to an eventual cure.
How can I participate in research?
Why should I participate in research?
im in kentucky , when they said my son tested positive for nf1 i was lost and didnt know where to turn , had very little info on what to do next or who to even talk to on how to help my child . they sent me an info kit that was very well organized and called me without asking to guide me and just give me pointers etc , thank you so much
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.