News and analysis
July 10, 2015

Nonprofit Teaches People to Raise Money for Rare Diseases Through Crowdfunding

A nonprofit disease-research organization that provides genetic sequencing plans to teach patients how to pay for the expensive process through crowdfunding.

The pilot program by the Rare Genomics Institute builds on the trend of people using crowdfunding to pay for expensive medical procedures.

Participants will solicit donations from friends and family, not the public, to avoid what institute president Jimmy Lin calls a "beauty pageant" or a contest for "who has the saddest story."

The four-year-old institute connects people, usually children, suffering from undiagnosed illnesses with doctors and research teams. The institute recommends that patients and their parents have parts of their genetic code sequenced, which typically costs $7,500 — too expensive for most of the institute’s clients, many of whom lack health insurance.

A 60-page e-book created by the institute contains crowdfunding case studies, facts about genetics, tips for crafting a personal story, guidelines about using social media, and advice on how to recruit family members and friends to help run the campaign.

Storytelling is essential to attracting donors, says Paul Schindler, executive director of the institute.

While the institute will provide support for the campaigns, the success of each one will depend largely on the effort of the patient’s family, Mr. Schindler says.

"The more they put into it, the more they’ll get out of it," he says.

Pilot Program

The pilot program, called Amplify Hope, is being launched with a grant from the John Templeton Foundation. The Rare Genomics Institute will start the effort with 50 to 100 people. Applicants will be selected based on medical condition, financial need, and suitability for crowdfunding, taking into account their Internet access, social-media presence, and community connections.

Families will be randomly assigned to use three crowdfunding sites — Indiegogo Life, YouCaring, or Crowdrise — and will receive suggestions tailored to their platform.

Each campaign will last 30 days and have the same fundraising goal of about $6,600, the subsidized cost of sequencing.

The institute will offer incentives to people who meet certain goals, such as raising money the fastest and getting the most social-media shares. Any additional money raised will help other people with get the tests.

Crowdfunding can be a good option for patients with diseases so uncommon that no nonprofits are dedicated to curing them, Dr. Lin says.

However, he cautioned that genetic testing usually doesn’t lead to a cure: Only a quarter to a third of patients receive a diagnosis, and just a fraction of those benefit from an intervention.

But even when it fails medically, there are emotional benefits to getting tested, he says.

"Having a label or name of a disease is humongous peace to the whole family," he says. "They can say they tried everything."

Send an e-mail to Rebecca Koenig.