A community for cures

Like so many enduring companies we have partnered with over the years at Spark, AllStripes (formerly known as RDMD) did not start out of some top-down market analysis. It began with a personal need that developed into a mission. Specifically, when entrepreneur Onno Faber was diagnosed with the rare genetic disease, NF2, that thrust him into navigating a new world where data was sparse and online communities were critical. That journey led him and CEO/co-founder Nancy Yu to discover a massive unmet need in an industry undergoing rapid transformation.

Rare diseases are not so rare. Today in the US, 1 in 10 people suffer from a rare disease, and half of these are children. Perhaps “long tail diseases” is a more appropriate term given that although common, they often afflict only hundreds or even dozens of people for each disease. These long tail diseases have undergone a massive shift in the last five years that is easy to miss if you haven’t been watching closely.

Rare diseases used to be a space where treatments were hard to create, hard to get approved and often felt fruitless when only addressing a handful of people no matter how transformative they are to those lives. Since then, two major things have happened.

First, since most rare diseases are genetic, the 100x drop in the cost of DNA sequencing has meant creating treatments has become more cost-effective even if they are addressing relatively small communities. Second, the FDA has been working to smooth the way for rare disease drugs to be approved quickly, which has led to almost half of all new drugs approved in the last few years being for rare diseases.

But there are still a couple of significant hurdles. Unlike cancer research, where there is a huge body of data at large cancer centers and plenty of people to conduct clinical trials, in rare diseases finding people and finding real longitude data is hard. It’s not a big data problem. It’s a long tail, small data problem.

Thankfully through a community-sourced, digital-first approach, AllStripes has begun to solve this. Nancy and her team have built a platform that gives power and a voice to rare disease patients. Through AllStripes, patients can rally each other to get their data out of the hospitals, create their own body of longitudinal data, and get the data into the hands of researchers to accelerate drug development. AllStripes allows patients to become active participants in their health journey, not passive consumers.

Spark Capital is proud to be leading AllStripes’s $14 million Series A, and excited to work with current investors Lux Capital, Village Global, and new investor, Maveron. Nancy and the team are on a mission that gives agency to people in an ecosystem where that often feels sorely lacking. We are thrilled about the promise AllStripes’s platform holds for millions of patients.