Rare disease patients are going to learn how to crowdfund for the latest sequencing options.

As part of their Amplify Hope program, Rare Genomics Institute are launching a 30 day Crowdfunding Bootcamp. Free for participants, the bootcamp helps patients who are looking to undergo high-end exome sequencing to better understand their disease and possible treatments.

“Rare Genomics Institute has helped many affected families by putting them in touch with the World’s top rare disease and genomics specialists,” said Jimmy Lin, MD, PhD, MHS, President of the Rare Genomics Institute. “However, expert opinion is sometimes not enough: proper diagnosis requires sophisticated genome sequencing and other research, often on the brink of human knowledge. The reality is that such projects are very costly. That is why, in addition to global scientific expertise, we will be involving top fundraising experts and provide hands-on coaching that was not possible before. I am excited to see how the Amplify Hope Initiative will help families raise much-needed funds to uncover the cause of their child’s illness.”

Families will get exposed to various fundraising platforms, and learn how best to plan out their own individual campaigns. This will include familiarization with social media and digital content creation to leverage existing networks and reach out to wider audiences.

This is a superb move by Rare Genomics Institute. As Jimmy Lin pointed out, finding treatments for rare diseases often requires the very latest technology and expertise. As this can be financially-limiting, crowdfunding has the potential to make finding answers much more accessible. The program in particular shows a great willingness to find solutions in the context of the world in which we live.

Crowdfunding has become an increasingly popular means to and end for various dreams/projects/businesses. There are already a few examples out there of patients turning to crowdfunding for sequencing. Setting yourself up on your platform of choice is very user-friendly, but getting funds is still a tough proposition. It looks like Rare Genomics Institute are going to help patients give themselves the best chance of success. Hopefully we’ll see some great stories from this project very soon.

 

Jimmy Lin is one of the Plenary Speakers at Festival of Genomics.