How Crowdfunding Could Help Cure Rare Diseases

By Adam Ostrow

By definition, rare diseases are hard to diagnose, receive little research funding, and are challenging to treat. One organization is trying to change all that through a crowdfunding model specifically aimed at helping those with the nearly 7,000 rare diseases in the U.S.

Dubbed the Rare Genomics Institute, the non-profit organization could be considered a Kickstarter for genomics. The project first connects a patient with a research institution that’s willing to take their case, and then develops a budget that can be funded by friends, family and online supporters.

The organization’s founder Jimmy Lin shared the stories of some of the patients using the service this week at TED. Anyone can view any patient's story on the Rare Genomics Insitute’s site, which describes the symptoms of the rare diseases that the patient is facing, then offers visitors a way to make a donation towards research.

Currently, the organization is piloting its program with four campaigns running on its site. However, Lin said that there are an additional 30 cases in the pipeline, with those patients paired with 13 different universities and research institutions across the country that are supporting the initiative.

It might seem like wishful thinking that crowdfunding can have the same impact as the hundreds of millions of dollars that often go into medical research. But Lin points out that the cost of human genome sequencing has dropped to less than $3,000. Many rare diseases are genetic; Lin’s optimistic that effective research can be funded through his model.

In the future, Lin also wants to utilize crowdfunding to not only diagnose diseases, but also develop cures using stem cells. “The long-term goal is to create bottom up funding for all types of research that’s possible … We hope to raise more money for rare diseases than the NIH … in 10 years,” he said.

Remarkably, the Rare Genomics Institute is only a side project for Lin; his day job is as a researcher at The University of Washington-St Louis, one of the participating institutions in his organization. Coincidentally, February 29 is Rare Disease Day, an international effort to raise awareness for rare diseases.