NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

Drawing on NORD's expertise in capacity-building and nonprofit management during crises, the new program will support rare disease patient organizations through education, training and resources

News provided by

National Organization for Rare Disorders (NORD)

May 21, 2020, 12:00 ET

WASHINGTON, May 21, 2020 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) today launched the COVID-19 Rapid Response Leadership Series, a program providing resources to support rare disease nonprofit groups in facing challenges brought on by the current pandemic.

NORD recently surveyed the rare disease community, collecting feedback from nearly 800 patients and caregivers on the impact of COVID-19 on their lives and medical care. From drug shortages to job and health insurance losses, rare disease families need the support of their rare disease organizations. This data, along with the direct input of NORD's member organizations about their work to support their communities in a virtual world with economic uncertainty, has underscored the need for new tools and approaches for patient advocacy organizations during this time.

"Our member organizations have shared that COVID-19 has created substantial obstacles for them, with so many struggling with rapidly changing demands on their infrastructure, including crisis communications, telework, cancellation of gatherings, conferences and fundraisers, and the direct impact on research and trials," said Debbie Drell, Director of Membership for NORD. "NORD's COVID-19 Rapid Response Leadership Series was created to meet these emerging needs. We are expanding our current capacity-building and membership support services to arm rare disease organizations with education and resources to become more agile and operate in this new environment."

A critical component of this multifaceted program is the timely creation and delivery of hands-on materials to ensure rare disease organizations remain solvent in this unprecedented time. With that in mind, NORD has cultivated content and identified experts to address critical areas challenging rare disease nonprofits. The COVID-19 Rapid Response Leadership Series will feature impactful videos and live webinars covering topics tentatively including:

Case Studies in Virtual Platforms for Meetings, Fundraisers and Conferences, May 28
Fundraising in a Pandemic, June 4
Crisis Communications, June 11
Leader Roundtable: Virtual Platforms for Conferences, June 18
Activating Your Board in Crisis, July 8

Information on speakers for these presentations will be forthcoming. In addition, useful downloads and other resources will be added to the COVID-19 Rapid Response Leadership Series webpage in the days and weeks ahead. NORD is grateful for the generosity of Sanofi Genzyme, AveXis, Mallinckrodt Pharmaceuticals, Vertex Pharmaceuticals, and Blueprint Medicines, the founding sponsors of this program.

For more information on NORD's COVID-19 patient assistance programs and regularly updated information for patients and rare disease nonprofits during the pandemic, visit our COVID-19 resource center, rarediseases.org /covid-19. In order to continue to meet the community's needs during this unprecedented time, NORD is seeking additional donations to its COVID-19 relief efforts. Please help us continue to aid our rare community.

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. NORD is committed to the identification, treatment and cure of more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children.

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. For 37 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with over 300 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.

SOURCE National Organization for Rare Disorders (NORD)