You can accelerate drug development in MG

(Myasthenia gravis)

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
By joining the MG 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?

Nicholas Silvestri (University at Buffalo)
Nicholas Silvestri (University at Buffalo)
Pushpa Narayanaswami (Beth Israel Deaconess Medical Center)
Pushpa Narayanaswami (Beth Israel Deaconess Medical Center)
RDMD Research for MG 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 MG program?

Key benefits for you:

Reduce the time for Myasthenia gravis 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 MG community

For the MG community

Jumpstart research and increase knowledge and understanding of Myasthenia gravis.

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 MG

Stay in the loop. We’re monitoring Myasthenia gravis 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 MG program

Tracking 7 trials

Catalyst Pharmaceuticals, Inc.Recruiting

Study to Evaluate Amifampridine Phosphate in Patients With MuSK-MG

argenx BVBARecruiting

An Efficacy and Safety Study of ARGX-113 in Patients With Myasthenia Gravis Who Have Generalized Muscle Weakness

Alexion PharmaceuticalsRecruiting

Safety and Efficacy Study of Ravulizumab in Adults With Generalized Myasthenia Gravis

Alexion PharmaceuticalsActive, not recruiting

ECU-MG-302: An Extension Trial of ECU-MG-301 to Evaluate Safety and Efficacy of Eculizumab in Refractory Generalized Myasthenia Gravis

Ra PharmaceuticalsActive, not recruiting

Safety and Efficacy Study of RA101495 in Subjects With Generalized Myasthenia Gravis

Immunovant Sciences GmbHWaiting to recruit

A Study of RVT-1401 in Myasthenia Gravis Patients

Momenta Pharmaceuticals, Inc.Recruiting

A Study to Evaluate the Safety, Tolerability, Efficacy, Pharmacokinetics and Pharmacodynamics of M281 Administered to Adults With Generalized Myasthenia Gravis

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 MG research

Myasthenia gravis (MG) is an autoimmune neuromuscular condition characterized by weakness in the muscles involved in voluntary movement and breathing. It occurs when a person develops antibodies that block communication between nerve impulses and muscles. MG results in muscle weakness and muscle fatigue that can fluctuate from mild to severe throughout the day. Many patients have weakness in the eye muscles, causing droopy eyelid and double vision. Muscles involved in facial movement, speech, swallowing, neck movement, and limb movement can also be affected. Involvement of the respiratory muscles may cause difficulty breathing and can be very dangerous. While MG is a rare condition, it is believed to be underdiagnosed. It can present at any age, with females typically diagnosed younger than men. While there are several treatments that can help manage MG, including immunotherapies, they are not 100% effective and there is no cure. New therapies are needed to help MG patients.

RDMD drives research on your condition as well as research on general health and wellness.

  • Jumpstart
  • Accelerate
  • Insights

The MG program is in the jumpstart stage.

Be part of research