Why join the MMA program
For the future
Help researchers get the information they need to advance development of new drug and gene therapies.
For the MMA community
Jumpstart research and increase knowledge and understanding of MMA.
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 MMA research
Methylmalonic acidemia (MMA) is a genetic condition where individuals cannot break down certain proteins and fats. The symptoms of MMA typically begin very early in life and vary from mild to severe. Those with MMA can experience vomiting, dehydration, fatigue, low muscle tone, and difficulty gaining weight. Developmental delay, intellectual disability, and damage to the kidneys, pancreas, liver, and brain can also occur. MMA requires lifelong management and in some cases, can be life-threatening. There is currently no cure.
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 methylmalonic acidemia and drive drug development and clinical trials.
Natural History Study
With early diagnosis, the expected lifespan of patients with MMA has increased over time. By studying the medical chart, researchers will be able to understand the issues that MMA can cause over a person’s lifespan. This will help researchers learn about the major issues that new MMA treatments should address in the future.
MMA Subtypes Study
There are several different categories of MMA. Some of these categories, such as the “mut0” or “mut-,” are more common than others. It is important to understand how each MMA category is similar to and different from the others over a person’s lifespan. By studying this, researchers will learn how we can better prepare families for the future and learn how different categories of MMA could be treated.
MMA Treatment Outcomes
While there is currently no cure for MMA, patients are often managed by diet, carnitine supplementation, antibiotics, and other treatments. Additionally, some patients receive an organ transplant. Learning more about why certain approaches are tried and how well they worked for each patient will help researchers understand what types of therapies might work for MMA in the future.
Hackathon & Discovery
Analyzing the genetic data of patients with MMA could help researchers understand why some patients have very mild or very severe MMA, and also help them to pinpoint different ways to treat the disease.