We empower patients and communities to accelerate therapy development in rare disease.

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

Our Programs

Our programs

These are some of the conditions currently open for patients and parents to sign up for. Please send us a message if you’re interested in participating and your condition of interest is not listed.

Making research
happen.

RDMD’s mission is to empower patients and communities to accelerate the development of treatments for rare diseases of all kinds.

The traditional drug development process isn’t able to support the unique needs of rare diseases, which affect 1 in 10 people worldwide. Important information from patient medical records is often trapped in hospitals or kept private, inaccessible to researchers who need it. Patients often have limited visibility and influence over how their information is being used for research.

RDMD aims to change that. We do hard work behind the scenes to ensure that patients’ medical information is as accessible, accurate, and usable as possible for medical researchers, while putting patients in control of their own data. By leveraging modern technology and data science, we empower patients to remove the barriers to treatment development at every step of the way.

“[RDMD] could be the missing link to accelerate rare disease research.”
– Danielle, mother of an MMA patient
“I support RDMD because I care about advancements in the treatment of Neurofibromatosis (NF) and I care about providing the very best care that I can for my son.”
– Jess, mother of an NF1 patient
“RDMD is a support resource for rare disease patients”
– Jill, mother of an NF2 patient
“RDMD streamlines all medical records for the patient and the doctor. This truly empowers patients, and their families, to know their medical history and to choose what they do with their health.”
– Hannah, NF1 patient
“I joined because RDMD does studies and research to help get other treatment options out for patients like myself.”
– Brooke, CIDP patient
“RDMD is giving me the steering wheel to decide how much I want to share, who I want to share it with, and how much I want to help the future of NF research.”
– Sheila, mother of an NF1 patient
“RDMD collects information from as many resources as possible to help those with rare diseases be diagnosed quicker in the future.”
– Carrie, CIDP patient
“The goal is for researchers to have access to complete data packages for patients”
– Lynn, IBM patient
“RDMD gives us an opportunity to be more involved in a research program. RDMD allows the cross-reference of your medical records to do research.”
– Randy, IBM patient
Our patient ambassadors

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 team

Onno Faber

Onno Faber

Founder, Chairman

Nancy Yu

Nancy Yu

Co-founder and CEO

Leo Vandriel

Leo Vandriel

Head of Engineering

Charlene Fernandez

Charlene Fernandez

Patient Operations Lead

Brenda Simpson

Brenda Simpson

Clinical Abstraction Lead

Kristina Cotter, PhD

Kristina Cotter, PhD

Alliance Manager

Bernie Xie

Bernie Xie

Software Engineer

Julia Saykally

Julia Saykally

Clinical Information Associate

Brett Chung

Brett Chung

Head of Product

Dione Kobayashi, PhD

Dione Kobayashi, PhD

Scientific Advisor

Gregory Enns, MD

Gregory Enns, MD

Medical Advisor

Join our team

We are determined to build a strong company around our mission, and be able to invest in as many diseases as we can to generate better outcomes for patients. We work as a team, help each other to be the best version or ourselves, promote open communication, learn from our mistakes, and do good in the world.