Accelerate drug development in NF2

Important research records are trapped in hospitals across the country. As a result, drug and gene therapy researchers can’t access the information they need to advance treatments.

But as a patient, you can. Unlock your records and contribute them to research, privately and securely.

RDMD

Questions? Check out our FAQ

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By joining the NF2 program, you will help advance new research. If you know other patients or families who may be interested, you can help by sharing this link.
Neo.life
Neo.life
Mens Health Magazine
Mens Health Magazine
Village Global
Village Global
Xconomy
Xconomy
Techcrunch
Techcrunch
CNBC
CNBC
LUX
LUX

Why join the NF2 program

For the future

For the future

Help researchers get the information they need to advance development of new drug and gene therapies.

For the NF2 community

For the NF2 community

Jumpstart research and increase knowledge and understanding of NF2.

For you

For you

See all your records in one place. Track how you are contributing to research and be notified about new clinical trials.

How it works

Sign up

1. Sign up

Create your private account and review our research consent (takes about 10 minutes)

We get to work

2. We get to work

We do all the behind-the-scenes work to retrieve and process your records

Empower research

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

Be part of research

Questions? Check out our FAQ

Our values &
principles.

1
Patients own their data

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.

2
We protect patient privacy

We abide by a strict research consent and privacy policy. We only share de-identified data with researchers, foundations, and therapeutic companies with patients’ consent. Protecting the privacy of patients and ensuring the security of their information is our highest priority.

3
Researchers gain access

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.

4
Inclusiveness in the community

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.

5
Driving forward therapeutic development

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.

Who’s involved?

Kaleb Yohay - NYU Langone
Kaleb Yohay - NYU Langone
Children’s Tumor Foundation
Children’s Tumor Foundation
NF2 Biosolutions
NF2 Biosolutions

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.

  • Jumpstart
  • Accelerate
  • Insights

The NF2 program is in the accelerate stage. When 100 patients join, we’ll reach our first significant research milestone.

Be part of research

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.

   

Biomarker Study

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.