Who is this study for?
Have you been denied insurance coverage for genetic sequencing? Do you find the cost of sequencing to be so high that you simply cannot afford to pay out of pocket for the test? This study empowers participants to raise funds for sequencing that otherwise could not afford the cost.
What is this study?
Rare Genomics Institute invites patients in need of genetic sequencing to join the Amplify Hope Initiative, a new research project that measures the effectiveness of different crowdfunding strategies, the resulting scientific impact and community engagement. This will be measured by survey answers submitted by both participants and campaign donors.
Why should I participate?
If accepted in the study, you will receive strategies for crowdfunding success, coaching, guidance, expert advice, access to a webinar, support from leading crowdfunding sites and tools to enable you to have a successful campaign.
How does it work?
First, apply using our application form. If accepted, you will be given crowdfunding training and strategies to prepare for the launch of your campaign. You will be assigned to a campaign platform and strategy. Each campaign will have the same crowdfunding goal amount as well as time, a 30-day campaign, to raise the funds online. When your goal is attained, exome sequencing is provided. Anonymous surveys before, during and after the campaign will be completed to determine crowdfunding capabilities and scientific engagement. Any additional funds raised above the goal will be used to help other undiagnosed children in need of sequencing.
What will this cost?
FREE! You do not have to pay to participate. The John Templeton Foundation has funded the coaching and resources participants will have for their campaigns. Sequencing will commence if you complete fundraising.
Will my information be kept confidential?
Due to the nature of online crowdfunding, any information you post will be at full view of the public. Information provided to the sequencing sites will be kept confidential. Answers to survey questions will be unidentifiable.