NORD Awards Grants to Help Rare Disease Organizations Adapt to Pandemic

NORD Awards Grants to Help Rare Disease Organizations Adapt to Pandemic
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The National Organization for Rare Disorders (NORD) has awarded 19 grants to nonprofit organizations, including the National PKU Alliance, as part of its COVID-19 Rapid Response Leadership Series program.

The grants are intended to help patient advocacy groups obtain the training and tools they need to operate within the virtual environment necessitated by the COVID-19 pandemic.

“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,” Debbie Drell, director of membership for NORD, said in a press release. 

Ongoing restrictions that have led to shifting away from large, in-person meetings resulted in a funding crisis for many organizations providing critical services to Americans living with a rare disorder.

As such, NORD developed the COVID-19 Rapid Response program to provide rare disease nonprofits with free educational webinars and capacity-building seed grants that can help adapt to the challenge.  

Capacity-building grants total up to $15,000 to cover the costs of products and services associated with virtual tools and software platforms. They  provide guidance on fundraising during a crisis, training for organizations facing problems with telework, and/or consulting on applicable human resources, development, technology, or communications demands.

In addition to the National PKU Alliance, current recipients include Cure CMD, The Global Foundation for Peroxisomal Disorders, and Friedreich’s Ataxia Research Alliance.

“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,” Drell said.  

To that end, lessons learned from the seed grants will be available to the public. NORD also will make other resources from the COVID-19 Rapid Response Leadership Series available through the organization’s COVID-19 Resource Center 

In April, NORD announced a separate financial aid program aimed at individuals in the rare disease community affected by the pandemic.

Called NORD COVID-19 Critical Relief Program, the initiative provides up to $1,000 annually to support critical, non-medical needs of rare disease patients and their families who may be facing monetary hardships due to the pandemic. Items covered include utility bills, cellular or internet service, car repairs, or rent and mortgage payments.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.

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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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