Findings from the programme to help rare disease families crowdfund to pay for needed genetic testing
Rare Genomics Institute (RG) announced the peer-reviewed publication of conclusions from their Amplify Hope Study, which has been published 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 programme 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, Rare Genomics Institute.
Thanks to generous funding from the John Templeton Foundation, the programme 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 programme 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 four 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.