For many rare diseases, because they are so rare, there are no therapies or even diagnostics. What is needed is research. However, very few people have the funding and the access to the technology needed to perform such a study. Non-profits and foundations have been a major force in pushing forward research, but for many rare diseases, no such groups exist. Rare Genomics Institute (RGI) is hoping to change that, especially for children such as Maya.
Using RGI’s crowdfunding platform, Maya’s family sought to raise the amount needed. The response was overwhelming. Within 6 hours, donors from all over the US gave to their cause in small amounts of $5 - $50 to raise the funds necessary for whole exome sequencing. With the funding available, the scientists were able to start the research study.
Founded in 2010, the industry website, Crowdsourcing.org, is a neutral organization dedicated solely
to crowdsourcing and crowdfunding. As one of the most influential and credible authorities in the crowdsourcing space,
Crowdsourcing.org is recognized worldwide for its intellectual capital, crowdsourcing and crowdfunding
practice expertise and unbiased thought leadership.