Why join the Hunter syndrome program
Reduce the time for Hunter syndrome (MPS II) drug development
All your medical data in one place
Follow new clinical trials
Make your de-identified health information part of multiple research projects
For the future
Help researchers get the information they need to advance development of new drug and gene therapies.
For the Hunter syndrome community
Jumpstart research and increase knowledge and understanding of Hunter syndrome (MPS II).
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
Stay in the loop. We’re monitoring Hunter syndrome (MPS II) 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.
Our values & principles.
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.
How we got started
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.
Our work with Hunter syndrome research
Hunter Syndrome, also known as mucopolysaccharidosis (MPS) type II, is a severe lysosomal storage condition that occurs when cells cannot break down long chains of sugar molecules known as glycosaminoglycans. This causes progressive damage to many organs. Hunter Syndrome primarily affects males, with symptoms starting in early childhood. Patients with severe disease experience progressive cognitive decline, breathing issues, and cardiac disease, and pass away at a young age. Patients with Hunter Syndrome also have short stature, a larger head and tongue, distinctive facial features, hearing loss, a large spleen and liver, and joint problems. There is a need for new treatments in Hunter Syndrome.
RDMD drives research on your condition as well as research on general health and wellness.