Why join the NF1 program
For the future
Help researchers get the information they need to advance development of new drug and gene therapies.
For the NF1 community
Jumpstart research and increase knowledge and understanding of NF1.
See all your records in one place. Track how you are contributing to research and be notified about new clinical trials.
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 &
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.
“Patients shouldn’t be bystanders in drug development.”
Four years ago I was diagnosed with a rare disease called NF2. I realized that, like most rare diseases, there were no adequate treatments available. I asked myself what I personally could do to help drive drug development forward.
I learned that the needed information is out there, but trapped in hospitals. We started RDMD to give patients the ability to unlock that information, and have a personal impact on drug development in their condition.
– Onno, Founder of RDMD
Our work with NF1 research
RDMD drives research on your condition as well as research on general health and wellness. These are the current research projects we aim to complete in order to increase our understanding of neurofibromatosis type 1 and drive drug development and clinical trials.
Learn how NF1 patients are typically diagnosed
Understand what evidence has been used to decide whether NF1 trials have been successful
Standard of care
Learn about the most common treatments used for NF1
Examine in detail how NF1 progresses over time
Hackathon and discovery
Use the genetic information from NF1 patients to help develop new treatments