Earlier this month, Rare Genomics Institute, an international non-profit that makes cutting edge research technologies of genome sequencing, physicians and scientists around the world accessible to rare disease patients, announced the Amplify Hope Initiative, a new study aimed at determining how crowdfunding can promote scientific research to help rare disease patients. Dr. Jimmy Lin, President of the Rare Genomics Institute, stated that he was "excited to see how crowdfunding will not only help raise much needed funds to uncover the cause of their child's illness, but also how it can educate an entire community about this latest revolution in medicine."
According to an RGI press release on the initiative, the organization will assist patients in implementing different crowdfunding strategies and methods, and track the overall reach and scientific impact of such strategies and methods. Participants and donors of these crowdfunding efforts will be asked to complete surveys to enable RGI to create additional resources, support, and education tailored to rare disease patients and caregivers. The project, which aims to measure the effectiveness of different crowdfunding strategies, as well as the resulting scientific impact and community engagement in such strategies, is being supported by a grant from the Templeton Foundation. RGI noted that scientific partners on the project include Ambry Genetics and Baylor Miraca Genetics Laboratories, and that crowdfunding partners include CrowdRise, Indiegogo Life, and YouCaring.
Additional information regarding the initiative can be found here.