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May. 21, 2020

TOPIC: Press Releases, Featured News, Patients & Members, COVID-19

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

Posted by Valaree DonFrancesco

Washington, DC, May 21, 2020—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:

o  Case Studies in Virtual Platforms for Meetings, Fundraisers & Conferences, May 28

o   Fundraising in a Pandemic, June 4               

o   Crisis Communications, June 11  

o   Leader Roundtable: Virtual Platforms for Conferences, June 18 

o   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, 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.


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