Why join the NF1 program?
Reduce the time for neurofibromatosis type 1 drug development
All your medical data in one place
Follow new clinical trials
Make your de-identified health information part of multiple research projects
Our work with NF1 research
Neurofibromatosis (NF) is a genetic disease that causes tumors to develop in the nervous system. There are three types, and neurofibromatosis type 1 (NF1), formerly known as von Recklinghausen NF or Peripheral NF, is the most common.
People affected by NF1 have an increased risk of developing many different types of tumors, both benign (noncancerous) and malignant (cancerous). Almost all people with NF1 have neurofibromas, which are benign tumors that appear along the nerves of the skin, brain, and other parts of the body.
There is currently no way to prevent or stop the growth of the tumors associated with NF1.
How it works
1. Sign up
Create your private account and review our research consent (takes about 10 minutes)
2. We get to work
We do all the behind-the-scenes work to retrieve and process your records
3. Empower research
Track your contribution to research projects and, based on your records, find out if you qualify for new clinical trials based on your records
Our values & principles.
We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.
We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.
We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.
Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.