Why join the NF2 program
For the future
Help researchers get the information they need to advance development of new drug and gene therapies.
For the NF2 community
Jumpstart research and increase knowledge and understanding of NF2.
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 NF2 research
Neurofibromatosis 2 (NF2) is a genetic condition where individuals develop benign (noncancerous) tumors of the nervous system. Individuals with NF2 typically develop vestibular schwannomas, which are benign tumors on the nerve in the inner ear. NF2 can also cause meningiomas and other benign tumors of the brain and spinal cord. The tumors caused by NF2 can cause hearing loss, issues with balance, vision loss, and decreased mobility. The symptoms of NF2 commonly begin when a person is in their twenties, though some people might have symptoms earlier or later. There is currently no cure for NF2.
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 2 and drive drug development and clinical trials.
NF2 Quality of Life
NF2 is a complex disease that can affect hearing, vision, and mobility. This can have a large impact on NF2 patients and their families. Researchers will study how much NF2 affects a patient’s ability to communicate with others and complete everyday activities, and will learn more about what NF2 symptoms cause the most issues for patients. By doing so, researchers will be able to understand more about what will help NF2 patients in the future.
NF2 Treatment Outcomes
While there is currently no cure for NF2, many patients try therapies that are approved for other kinds of tumors and cancers. Learning more about why these therapies are tried and how well they worked for each patient will help researchers understand what types of therapies might for for NF2 in the future.
NF2 Research Study Outcomes
Many NF2 patients have participated in clinical trials. How are these patients doing today, and what can we learn from their experiences in the clinical trial? By studying the clinical data of trial participants before, during, and after the trial, researchers will be able to learn more about how to make NF2 clinical trials more successful in the future.
Some patients develop NF2 earlier than average, while others develop it late in life. Some have very severe NF2, while others have more mild symptoms. Why is this? By studying clinical information from the medical record and genetic data from patients, researchers might be able to pinpoint why there is so much variability in this disease and identify new ways to diagnose and treat NF2 patients.
Hackathon & Discovery
By analyzing the clinical, genetic, and tumor data from NF2 patients, researchers can look for new ways to stop or prevent tumor growth. All of this data could ultimately help identify or develop new therapies for NF2.