Patients Powering Progress for NF
NF Registry
The NF Registry helps connect patient experience to scientific progress. When you join, you complete a brief survey about your health and experiences once per year. This information provides researchers with a clearer picture of NF and guides new studies and potential treatments.
The NF Registry is an online registry for people with all types of NF, which includes neurofibromatosis type 1 (NF1), and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN).
For Patients
Get Involved
Information collected during this study may be used to help provide opportunities for patients and researchers to collaborate in the NF community.
For Researchers
Drive Research
This is a unique rare disease patient registry. Are you interested in using our data to further NF research?