How to fight rare diseases through crowdfunding

“With CauseVox, we were able to focus on helping children with rare diseases connect with researchers and not worry about building a fundraising platform. It has saved us hundreds of hours and still give our families a beautiful and easy way to raise funds.”

~ Dr. Jimmy Lin, Rare Genomics Institute

About Rare Genomics Institute
Rare Genomics Institute (RGI) helps patients with diseases so rare that there are no organizations, researchers, and support structures for them. RGI custom creates research study, connects them with top scientists, and helps fund the studies using crowdfunding.

Through DNA sequencing, the result is not only help for one person, but for all future children and families with the same illness, as well as informing the scientific community of related disorders and basic biology.

Online fundraising approach
Each of RGI’s campaigns is focused on one patient with a rare disease. Currently, RGI helps them by sequencing their genomes and figuring out the potential genetic defect causing their disease. RGI studies typically involve sequencing both parents and the child to maximize success in finding the potential causative gene.

Fundraising techniques

• Press approach: Due to the nature of the stories, many of RGI’s patient stories were covered in traditional media (newspaper, radio, and TV).
• Social media: RGI’s patients shared the campaigns on Facebook and Twitter and encouraged their friends and family to do so as well.
• Offline Fundraising: RGI encouraged patients to organize events, such as a raffle or gala, to raise funds. This enabled those that were not reached online to support the cause.

Why CauseVox?
“We wanted a platform which was the same look and feel as our site. We did not want to have our donors visibly go to another site to give.”

~ Dr. Jimmy Lin, Rare Genomics Institute

Key metrics of the campaign include (rounded figures):

• Total number of fundraising pages: 4
• Fundraising pages that raised $10 or more: 4
• Highest amount raised on fundraising page: $ 7700
• Average funds raised per page: $ 6000
• Average online donation size: $50
• Total number of online donations: 300
• Facebook “Likes” on the campaign site: 200

Lessons learned

• Make it easy for donors to give. Eliminate any extra steps and sign ups.
• Social media sharing drives donation. Encourage participants to share their fundraising page to their friends and family.
• Sharing more content over time allows more giving. Help the donors be engaged with the whole story instead of just one timeline.
• People want to contribute. Providing small amounts give them the chance despite their current financial situation.

To learn more about Rare Genomics and the work that they do, visit them at www.raregenomics.org