Amplify Hope Study findings published on Engaging a Community for Rare Genetic Disease
/Los Angeles C.A., February 05, 2018 – Rare Genomics Institute (RG) today announced the peer-reviewed publication of conclusions from their Amplify Hope Study in the Interactive Journal of Medical Research (IJMR). The paper, Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns, discusses their findings from the program created to help rare disease families crowdfund to pay for needed genetic testing.
“By empowering families, engaging our community and connecting directly with providers for needed genetics services, we hope to shorten the diagnostic odyssey and get these children on the road to answers and hopefully, one day a cure. We are so grateful to receive the support of the John Templeton Foundation to do what we do best, support our rare disease families.” said Romina Ortiz, MHS, COO of the Rare Genomics Institute
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Thanks to generous funding from the John Templeton Foundation, this program was developed and delivered for rare disease families free of charge. Partners on the project included two life sciences technology leaders: Ambry Genetics and Baylor Miraca Genetics Laboratories, and three leading pioneers in crowdfunding: CrowdRise, Indiegogo Life and YouCaring.
The rigorous 30 day program trained families on topics ranging from: preparation before launching their campaigns, reaching out to networks, leveraging social media and video content, and understanding different crowdfunding platforms The Amplify Hope study included a series of free online live webinar training events from top experts around the world, live phone assistance, and coaching from experienced experts. Of the 86 study inquiries, 11 participants submitted the required forms and launched their crowdfunding campaigns. A total of 4 of the 11 campaigns raised their goal amounts within 30 days. We found that social media played an important role in all campaigns. Specifically, a strong social media network, an active outreach process to networks, as well as engagement within the study all correlated with a higher success rate. For more results, view the full-access publication at http://www.i-jmr.org/2018/1/e3/. For resources from the Amplify Hope Study, please visit our site here: https://www.raregenomics.org/amplify-hope-resources
About The John Templeton Foundation
The John Templeton Foundation serves as a philanthropic catalyst for discoveries relating to the deepest and most perplexing questions facing humankind. We support research on subjects ranging from complexity, evolution, and emergence to creativity, forgiveness, and free will. We encourage civil, informed dialogue among scientists, philosophers, and theologians, as well as between such experts and the public at large. In all cases, our goal is the same: to spur curiosity and accelerate discovery.
In order to catalyze such discoveries, we provide grants for independent research that advances the mission of the Foundation. Our grants for public engagement help people worldwide engage the fruits of that research and explore the Big Questions.
About Rare Genomics Institute
Rare Genomics Institute (RG) was founded in 2011 to fill the health care gap for undiagnosed rare disease patients and supporting research in rare diseases. RG helps rare disease patients find a diagnosis, treatment, and pathway to a cure by individualized access, coordination and execution of genetic sequencing and research services with RG and its affiliates. RG also supports rare disease advocacy by fostering an online community of rare disease patients, and supporting rare disease research through a yearly grant competition. We hope that these efforts slowly push science and care forward to meet the needs of the patients affected by rare diseases.