Washington, DC, October 28, 2020—As part of its commitment to community engagement and organizational capacity building, the National Organization for Rare Disorders’ (NORD®) RareLaunch® training program will host two days of free workshops to take place in December, funded in part through a grant from the Chan Zuckerberg Initiative Donor-Advised Fund, an advised fund of Silicon Valley Community Foundation.
More than 50% of the 7,000 known rare diseases lack organized representation or support, leaving patients on their own to search for trusted resources and connections. NORD’s RareLaunch program aims to empower leaders to start much-needed rare disease nonprofits, and supports existing patient advocacy organizations in developing their capacity to engage in research. These two areas of capacity building represent pivotal stages in a rare disease community’s growth and development and therefore are the focus of December’s workshops.
Forming a Foundation connects patient communities and provides education, training and support for patients and caregivers looking to start nonprofits. For those already involved in rare disease nonprofits, the program also assists in building capacity, including implementing good governance practices to ensure sustainable growth. Research Ready educates and enables established patient organizations to prepare for scientific research via the creation of rare disease registries, so they can effectively support research and development in their disease-specific area.
“The RareLaunch program is central to NORD’s mission and history—community engagement and capacity building are in our DNA. Our organization was formed through a grassroots advocacy campaign to bring rare disease patients and families together to fight for a brighter future,” said Pamela Gavin, NORD’s Chief Strategy Officer. “And 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. Through RareLaunch, NORD provides skills and tools to help make that progress a reality.”
NORD will host free RareLaunch training workshops where registrants may attend one or both of the four–hour virtual training sessions:
On December 2, 1:00-5:00pm ET, the Forming a Foundation workshop will provide assistance with overcoming the obstacles to starting a nonprofit. Authorities in governance will join those who have developed a nonprofit for their rare disease to present on cultivating community when your rare disease population is small, fundraising without a 501(c)(3), developing a board and growing your nonprofit.
On December 3, 1:00-5:00pm ET, the Research Ready workshop will feature a keynote from Dr. Christopher Austin, Director of the National Institutes of Health’s National Center for Advancing Translational Sciences (NCATS). Leading subject experts will provide guidance on establishing and funding a research program and natural history study, collaborating with scientists and industry stakeholders and more.