The NF Registry is a secure website that allows people living with all forms of NF to take an active role in the search for better treatments. Joining the Registry is as simple as filling out a survey once each year about your symptoms and experiences.
Participating is safe, easy, and secure. For those under age 18, a parent or legal guardian/caretaker must complete the survey.
The Children’s Tumor Foundation has sponsored the Registry since 2012 with two main goals in mind:
- Keeping patients informed about NF news and current research (including tests of new treatments)
- Helping NF researchers learn about NF from the patient perspective by providing a source of anonymized information from thousands of patients
The Registry now has over 11,000 participants. This is terific—but 11,000 represents a very small percentage of the world’s population of individuals living with NF. The more people who participate, the greater the impact will be, and the more we learn about the many ways NF impacts patients from around the world.
The NF Registry is available in six languages: English, French, Italian, Portuguese, Spanish, and German.
