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Rare Genomics Institute Launches Crowdfunding Effort for Patients Seeking Exome Sequencing

NEW YORK (GenomeWeb) – The Rare Genomics Institute has launched a 30-day crowdfunding bootcamp to help patients with rare disease raise money for diagnostic exome sequencing. The project is part of a new Rare Genomics program called Amplify Hope, which helps patients and families navigate fundraising opportunities.

The goal of the bootcamp is to train families how to use fundraising platforms, design campaigns, network, and use social media. The Templeton Foundation is funding the bootcamp, which is free for participants. Fundraising experts will conduct webinars and offer remote support.

Rare Genomics President Jimmy Lin said in a statement that "proper diagnosis requires sophisticated genome sequencing and other research," but that such projects are "very costly. … That is why, in addition to global scientific expertise, we will be involving top fundraising experts and provide hands-on coaching that was not possible before."

Rare Genomics has also partnered with Ambry Genetics and Baylor Miraca Genetics Laboratory, as well as crowdfunding companies CrowdRise, Indiegogo Life, and YouCaring. XTeros will provide communications software.