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Rare Diseases And Crowdfunding: Rare Genomics Institute’s Amplify Hope Initiative

May 5, 2015

In the last several years, the concept of crowdfunding and its relationship to rare diseases and orphan drugs has become a popular way of raising funds. Crowdfunding is a “collective effort of individuals who network and pool their money, usually via the Internet, to support efforts initiated by other people or organizations.”

There are two crowdfunding models:

•   Donation model

•   Equity-based or investment-based model.

The first type of model, the donation model, posts interesting projects on websites or on a crowdfunding platform, and then, individuals donate money for no return or, at most, access to discounts or early release of products for a particular cause or campaign. The second type of model, the equity-based model involves actual investment in an entity that is pursuing a project and where individuals receive an ownership interest in the entity.

The Rare Genomics Institute (RGI) announces May 5th, a study that will determine how crowdfunding can promote scientific research to help undiagnosed rare disease patients raise funds for genetic sequencing and its impact on community engagement. According to Jimmy Lin, MD, PhD, MHS, and President of RGI:

“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.”

Starting May 2015, study participants are being recruited (see website for how to apply) and will be assigned to a crowdfunding strategy and platform, to raise money for their genetic sequencing. Per the RGI website:

•   Approximately 50 families will be randomly assigned to a crowdfunding strategy and platform to raise money for their DNA sequencing

•   Each campaign will have the same target crowdfunding goal amount as well as 30 days to raise the funds online

•   After goal is reached, funds will be transferred and exome sequencing starts

•   Any additional funds raised will be used to help other undiagnosed children in need of sequencing

•   Surveys are sent to measure impact before, during and after the campaign. Answers to survey questions will be unidentifiable.

Amplify Hope Initiative’s 2015 Timeline

Month Activity
May – June Apply for the study
June – July Accepted applicants receive training for crowdfunding
August Crowdfunding campaigns are launched, with study participants receiving support & coaching during campaigns
September Funds are raised & transferred for genetic sequencing

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Please Note: “Full Spectrum Team Waving” by lumaxart [CC-BY-SA-2.0], via Wikimedia Commons.

Copyright © 2012-2015, Orphan Druganaut Blog. All rights reserved.

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2 Comments
  1. Thanks for bringing this to my awareness. I may apply, as I desire a DNA test to pin down which SMA I possess or learn if it is a mutation. Genetic testing is expensive, and I was turned down once already. I feel conflicted about this crowdfunding approach; on the one hand, it is an innovative funding scheme and I have seen and participated in publicizing a couple successful projects. On the other hand, it is something of a popularity contest, like all of social media is (kittens and babies). After RGI’s project is completed, any honest assessment needs to look at the popularity contest aspect. And I am aware that there are other unfairnesses inherent in every scheme; setting up something like a competition in which the more media-savvy patients win the prize of an important test leaves a bad taste in my mouth, at least at first glance. I may think differently when I look more closely at it. Thanks again-Mark

    • Hi Mark –

      Thanks for your comments & honesty on the issue of crowdfunding & its use in rare disease space. I agree with your thoughts, and always try to see both the positive and negative side to everything. I always hope for the best, and if the RGI crowdfunding project will help you or anyone else, go for it. Crowdfunding is part of the social media world. Thanks again & please continue with your blog posts !! Ann

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