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.
RDMD is on a mission to accelerate treatments for patients with a rare disease, affecting 1 in 10 people worldwide. Rare disease patients suffer from a lack of treatment options because a smaller patient group means fewer resources are devoted to the development of treatments. The main challenge is that pharma companies cannot get efficient access to the data needed to bring therapies to market. Patients, however, are highly motivated to contribute, as their lives are at stake and no other options are available. We work on behalf of patients to generate regulatory-grade clinical and molecular data in a central place.
By generating the data proactively–before the next phase of a clinical trial or even before a pharmaceutical program exists–we can de-risk and speed up the entire clinical trial process (currently the probability of success in orphan diseases is a mere 13.5%). Since we invest in the disease area itself, agnostic from any drug in particular, we can leverage the same data for multiple therapeutic candidates.
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Exponential Medicine brings together top experts to inform medical leaders how technology is impacting business. View the full list of 2018 faculty: