You can accelerate drug development in NF2

Important research records are trapped in hospitals across the country. As a result, drug 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.

Questions? Check out our FAQ
120/150 joined
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

Who’s involved?

Kaleb Yohay (NYU Langone)
Kaleb Yohay (NYU Langone)
Children’s Tumor Foundation
Children’s Tumor Foundation
NF2 Biosolutions
NF2 Biosolutions
RDMD Research for NF2 is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation.Read more.

Why join the NF2 program?

Key benefits for you:

Reduce the time for neurofibromatosis type 2 drug development

All your medical data in one place

Follow new clinical trials

Make your de-identified health information part of multiple research projects


Your dashboard
Your dashboard

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 neurofibromatosis type 2.

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

Clinical trials for NF2

Stay in the loop. We’re monitoring neurofibromatosis type 2 clinical trials that may be interesting for patients. We can contact you if we find potentially matching trials, and keep you up to date if there are new trials or changes.

Join the NF2 program

Tracking 7 trials

Massachusetts Eye and Ear InfirmaryActive, not recruiting

Exploratory Evaluation of AR-42 Histone Deacetylase Inhibitor in the Treatment of Vestibular Schwannoma and Meningioma

Massachusetts Eye and Ear InfirmaryRecruiting

Study of Aspirin in Patients With Vestibular Schwannoma

Children’s Hospital Medical Center, CincinnatiRecruiting

Trial of Selumetinib in Patients With Neurofibromatosis Type II Related Tumors

Massachusetts General HospitalRecruiting

Resiliency Training for Adults With Neurofibromatosis Via Live Videoconferencing

Jonsson Comprehensive Cancer CenterActive, not recruiting

Study of RAD001 for Treatment of NF2-related Vestibular Schwannoma

New York University School of MedicineActive, not recruiting

Study of Axitinib in Patients With Neurofibromatosis Type 2 and Progressive Vestibular Schwannomas

Massachusetts General HospitalActive, not recruiting

AZD2014 In NF2 Patients With Progressive or Symptomatic Meningiomas

See clinicaltrials.gov for more information

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.

How we got started

“Patients shouldn’t be bystanders in drug development.”

– Onno Faber (Founder of RDMD)

Four years ago, I started experiencing hearing loss in my left ear. Doctors prescribed me steroids, thinking it was an infection, but the deterioration did not slow down. After numerous failed treatments, a specialist finally ordered an MRI, whereupon he discovered a large tumor on my left hearing nerve. Months later, another tumor was discovered in my right hearing nerve, and another on my spine. I was diagnosed with a rare genetic disease called NF2 (Neurofibromatosis Type 2), a disease that affects only 1 in 30,000 people. It completely changed my perspective.

All my life, I’ve been a technology entrepreneur, beginning with a tech company I started in high school. I’m now applying everything I’ve learned throughout my career to build RDMD, where we’re helping to accelerate treatments for patients with rare disease. Our mission is ambitious, but I can’t imagine working on anything more important than this.

– Onno

Onno FaberPhoto Credit: from Neo.life by Damien Maloney

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.

We currently have the following studies ongoing for NF2:

  • Jumpstart
  • Accelerate
  • Insights

The NF2 program is in the accelerate stage. When 150 patients join, we’ll reach our first significant research milestone.

Be part of research