Rare Disease Report

Amplify Hope Study Educates Families on Crowdfunding for Genetic Testing

FEBRUARY 08, 2018
Kaitlynn Ely
The Amplify Hope Study, sponsored by the Rare Genomics Institute, analyzed the effects of educating families affected by rare disease on how to effectively crowdfund to pay for necessary genetic testing.

While genetic testing is essential to diagnosing and, ultimately, treating patients with rare diseases, many families are unable to afford the expensive tests and therapies available. The Amplify Hope Study allowed rare disease families the tools to engage their community while also measuring the effect crowdfunding had on financing their medical expenses.

With funding from the John Templeton Foundation, the educational program was free of charge for those eligible. Developers and partners on the project included Ambry Genetics, Baylor Miraca Genetics Laboratories, CrowdRise, Indiegogo Life, and YouCaring.

“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 in a press release.

Participating families were trained through a 30-day program that covered approaches that make the most out of their crowdfunding campaign, including preparation before launching their campaigns, reaching out to networks, leveraging social media and video content, and understanding different crowdfunding platforms.

These topics made up a series of webinars from world-renowned experts in science and crowdfunding, life phone assistance, and coaching from experienced experts.

The study that was published in The Interactive Journal of Medical Research, found that 11 out of the 86 interested family participants completed the program and launched their crowdfunding campaigns. 4 of the 11 families raised their monetary goal within 30 days.

Social media was found to be the most important way to engage community members in donating money. This does not come as a surprise as past campaigns, like the ALS Ice Bucket Challenge, gained popularity through Facebook by reaching 17-million people and raising a total of $89 million for research.

Other important factors that proved a strong, successful crowdfunding campaign were an active outreach process to networks and engagement within the study. Families must be willing to let their story be heard by all in order to reach their crowdfunding goals.

“My advice to parents facing similar circumstances would be to never give up hope. Never stop searching. Push for answers and don’t accept complacency from your medical team. Try to take things one day at a time and always trust your instincts,” said Susan Snow, a parent of a child with a rare disease at the Amply Hope Conference, in a video.

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