Rare Genomics Institute to Study Impact of Crowdfunding on Rare Diseases
Washington D.C., May 6, 2015 – Rare Genomics Institute (RG) today announced the Amplify Hope Initiative, a new study aimed at determining how crowdfunding can promote scientific research to help rare disease patients. RG is an international non-profit providing rare disease patients with access to state of the art genomics sequencing technology, connections to scientists and researchers, and help for payment of these services through grants, insurance, or crowdfunding.
“I am 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,” said Jimmy Lin, MD, PhD, MHS, President of the Rare Genomics Institute.
Patients will be lead through different strategies and coached through different methods for crowdfunding. During the whole process, in addition to the funds raised, the study will track overall reach and scientific impact on their community. Anyone can donate and share these campaigns through social media to spread the word about the promise of genetic sequencing and raise money to help families affected by rare ailments. Participants and donors will be asked to complete surveys to enable RG to create additional resources, support and education tailored to rare disease patients and caregivers.
Rare Genomics is inviting patients, families, friends, industry partners and everyone to join in support of the Amplify Hope Initiative. Thanks to a generous grant from the Templeton Foundation, this project will measure the effectiveness of different crowdfunding strategies, the resulting scientific impact and community engagement. Scientific partners on this project include two life sciences technology leaders: Ambry Genetics and Baylor Miraca Genetics Laboratories. Crowdfunding partners include three leading pioneers: CrowdRise, Indiegogo Life and YouCaring. Communications software for the project is provided by xTeros.
For more information about the Amplify Hope Initiative and to apply, please visit http://amplifyhope.raregenomics.org/
About Rare Genomics Institute
Rare Genomics is an international 501(c) 3 non-profit that makes cutting edge research technologies of genome sequencing, physicians and scientists around the world accessible to rare disease patients. Rare Genomics helps families source, design and fund personalized research projects for diseases not otherwise studied helping rare disease patients find hope for a cure. By providing an expert network and an online crowdfunding mechanism Rare Genomics works alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease.
For further information on Rare Genomics, please visit http://www.raregenomics.org.
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