Rare Genomics Institute is announcing the Amplify Hope Initiative, a new study to help undiagnosed rare disease patients raise funds for exome sequencing and investigate crowdfunding strategies and their impact on community engagement.
Rare Genomics is an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe. By providing an expert network and an online crowdfunding mechanism, Rare Genomics helps families pursue personalized research projects for diseases not otherwise studied.
We bring together scientists who share our passion for helping rare disease patients and leverage the crowdfunding capabilities of the internet to bring the hope of a cure to our patients. Rare Genomics has been at the forefront of connecting families to genetic sequencing technology.
EVENT Details: Study participants are being recruited starting in April of 2015. To participate, complete the application form. If accepted, participants will be given crowdfunding training and strategies for success. Participants will be assigned to a crowdfunding strategy and platform to raise money for their sequencing. All campaigns launch June 1.
Each campaign will have 30 days to raise the funds online. Money raised will be used to pay for the cost of the participant and parents to be exome sequenced. Anonymous surveys before, during and after the campaign will be completed to determine crowdfunding capabilities and engagement with science.
Any additional funds raised will be used to help other undiagnosed Rare Genomics children in need of sequencing. There is no cost to you to participate. The study has been funded by the John Templeton Foundation.
Help Us Inspire and Amplify Hope — Join Rare Genomics and our partners as we support these RARE campaigns. Tell your friends to donate and spread the word starting JUNE 1.
Watch RGI Founder & President, Jimmy Lin, speak at TEDxMidAtlantic.
Solving the Mystery of Rare Diseases With Technology and Crowdfunding