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?
Thank YOU for all that you do for people with NF and their families! It brings tears to my eyes to see how much was raised for this cause. My brother had NF which turned cancerous and he passed away February 10, 2011 after a not-so-easy life with NF. My sister and father also struggled with this disease, then cancer and passed away in 1991 and 2008 respectively. This was our first NF Walk and we look forward to next year's. We were impressed with the organization of the walk, the DJ, the food, the prize baskets, the facilities and of course all of the care that went into it. My remaining sister and I, and our families, are determined to help out in any way to help cure this disease or assist other families who have NF in their lives. We look forward to raising more funds next year and dressing up our team! Our goal as a team is to raise a lot more money next year!
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.