RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations
January 20, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced enhanced learning and updated courses now available through its innovative RareLaunch® program. Throughout its long history, NORD has been committed to supporting patients and families looking to start nonprofits and to nonprofits looking to expand into research.
With support from the Chan Zuckerberg Initiative, NORD’s RareLaunch provides an accessible, self-guided educational platform that allows an individual to explore the steps to start a nonprofit and/or to engage in starting or expanding research efforts as a nonprofit leader. The updated platform integrates videos from NORD’s popular and well-reviewed RareLaunch workshops conducted in winter 2020 and spring 2021, in which rare disease advocates and other experts in the field of nonprofit governance and research offered best practices and training to the community.
Since launching, nearly 1,000 participants have registered for the workshops, and more than 700 additional people have viewed the workshop content on demand.
“NORD is tirelessly committed to empowering all those who are working on behalf of the nearly 30 million Americans impacted by a rare disease. We are thrilled to build on our history of community engagement and leadership building with the latest addition to the RareLaunch program. Today’s release will serve as a springboard for all the individuals, families and innovators founding much-needed rare nonprofits here in the United States and around the globe,” said Pamela Gavin, Executive Vice President, NORD.
RareLaunch currently offers two dynamic courses, Forming a Foundation and Research Ready. Forming a Foundation provides education and training for interested patients and caregivers looking to form rare-disease-focused nonprofits. Research Ready supports the efforts of patient organizations to effectively prepare for scientific research and the creation of rare disease registries. Both courses emphasize capacity building and expanding confidence at a pivotal stage in a rare disease community’s growth and development.
There are over 7,000 rare diseases and 30 million Americans estimated to be currently living with rare diseases. It is estimated that more than 50% of rare diseases don’t have any organized representation or a supporting organization, and more than 90% of rare diseases lack an FDA-approved treatment.
To learn more or register for the RareLaunch program, visit learn.rarediseases.org.
About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.
