NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.

“The RareLaunch program is central to NORD’s mission and history — community engagement and capacity building are in our DNA,” Pamela Gavin, NORD’s chief strategy officer, said in a press release.

“Our organization was formed through a grassroots advocacy campaign to bring rare disease patients and families together to fight for a brighter future,” she said.

That was in 1983, when a small group of patient advocates launched a coalition, now NORD, to unify their voices and generate support for what would become the Orphan Drug Act.

“Although the means by which we connect and communicate have changed since 1983, the need to help foster the creation of even more disease-specific patient organizations and support therapeutic research remains,” Gavin said. “Through RareLaunch, NORD provides skills and tools to help make that progress a reality.”

The first workshop, called “Forming a Foundation,” will take place on Dec. 2 from 1-5 p.m. ET. This workshop will provide caregivers, patients, and advocates with assistance for overcoming any obstacles to starting a non-profit. For people already involved in non-profits, the workshop will offer aid in building capacity, implementing good governance practices, and ensuring sustainable growth. It will feature authorities in governance, as well as people who have started their own rare disease non-profits, who will share their experiences.

The second workshop, dubbed “Research Ready,” will be held Dec. 3 from 1-5 p.m. ET. In this session, experts will provide guidance on establishing and funding a research program, including advice on collaborating with researchers and with industry stakeholders. The aim is to better equip non-profits to support research into the specific disease for which they’re advocating. This workshop will feature a keynote from Christopher Austin, MD, director of the National Institutes of Health‘s National Center for Advancing Translational Sciences (NCATS).

According to NORD, there are around 7,000 known rare diseases. Of these, it is estimated that over half lack organized representation or support, which makes it difficult for people with these diseases to make connections and get reliable information.

NORD’s RareLaunch program was started with two main aims: to make it easier for people in rare disease communities to start non-profits, and to empower existing non-profit organizations to more effectively engage with research.

Registration for the RareLaunch workshops can be found here; individuals can attend one or both free sessions.

The workshops are funded in part through a grant from the Chan Zuckerberg Initiative Donor-Advised Fund.