Patients with rare diseases are turning to crowdfunding for research and treatment. But it can be a confusing arena for someone who's not tech savvy and fighting a rare illness. One nonprofit is taking the lead on helping.

The Rare Genomics Institute was launched by Dr. Jimmy Lin to help patients with rare diseases access resources not normally available to them. The Hanover, MD-based organization started guiding patients in running their crowdfunding campaigns in 2011. With all the lessons learned, RGI launched an educational arm called Amplify Hope to give families willing to put in the time to run such a campaign intense training on raising $10k through crowdfunding.

The money (after service fees) goes directly to the patient and families like this couple whose son has benefited from RGI's resources. After the money is raised, they get help from RGI setting up research programs. Jimmy says the crowdfunding model has worked well for donors who like a direct connection to what they’re supporting. And crowdfunding also helps draw awareness to rare diseases. Personal storytelling has become a huge component, says Jimmy. RGI, launched four years ago, has run with 100 volunteers in 12 countries and just recently hired its first full-time staffer and two part-timers.

The nonprofit also raises its own funds to help patients with research and has awarded over $600k in funding. Some of the research is done by RGI volunteers or set up through outside partnerships. Much of the work is focused on getting genomics sequencing to find out how the disease developed and how to treat it. Jimmy says sequencing has dropped in price and some insurance plans are starting to reimburse the cost. But it’s created a backlog of sequencing that needs analysis so that patients know what to make of the results. RGI also provides the analysis through partners.