NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

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Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient advocacy groups to access capacity-building tools and training needed in the new virtual environment made necessary by COVID-19. 

Once large in-person meetings, including vital fundraising events and conferences, were canceled many organizations providing critical services to Americans living with a rare disease were faced with a funding crisis. NORD developed a COVID-19 Rapid Response Leadership Series program to help rare disease nonprofits face such challenges through free educational webinars and capacity-building seed grants.  

The following recipients have been awarded a COVID-19 Rapid Response Seed Grant. 

  • Cure CMD 
  • Familial Dysautonomia Foundation 
  • Fibrous Dysplasia Foundation 
  • Histiocytosis Association, Inc. 
  • CHAMP1 Research Foundation 
  • Life Raft Group, Inc. 
  • United MSD Foundation 
  • Friedreich’s Ataxia Research Alliance 
  • Sara’s Cure 
  • The Global Foundation for Peroxisomal Disorders 
  • National PKU Alliance 
  • The Cute Syndrome Foundation 
  • Tatton Brown Rahman Syndrome Community 
  • GBS|CIDP Foundation International 
  • Sickle Cell Association of Texas Marc Thomas Foundation 
  • Cicatricial Alopecia Research Foundation (CARF) 
  • Wilson Disease Association 
  • GRIN2B Foundation 
  • Spinal CSF Leak Foundation

Capacity-building grants of up to $15,000 were made to cover the cost of various applicable products and services associated with virtual tools and software platformstraining on fundraising during a crisisHR-related training for organizations struggling with telework, and/or consulting on relevant development, technology, communications or human resources needs 

“NORD wishes to serve as the rising tide that lifts all ships. The organizations selected for COVID-19 Rapid Response Seed Grants will execute new strategies to pivot to a virtual environment, and then share their takeaways with our 320 member organizations,” said Debbie Drell, Director of Membership for NORD. “Our intention is not only for awardees to turn their own organizations around, but to help elevate all NORD members by providing their experiences firsthand.”  

To that end, the learnings from the seed grant implementations will be made available to the public, along with the other valuable resources and materials from NORD’s COVID-19 Rapid Response Leadership Series through the COVID-19 Resource Center on NORD’s website.  

In order to continue to meet the community’s needs during this 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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