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COVID-19 Rapid Response Leadership Series

NORD stands in solidarity with the rare disease community and extends support to individuals and nonprofit organizations impacted by COVID-19, directly and indirectly. Through our work with nearly 700 leaders in our network of over 300 rare nonprofits, we understand the unique, critical support these patient organizations provide for over 25 million Americans impacted by rare disease.

 

Nonprofit Challenges

We have heard from our member organizations that COVID-19 has put overwhelming pressure on their capacity to serve patients. Rare disease nonprofits have been struggling with the rapidly-changing demands on their infrastructure, including crisis communications, forced moves to telework, cancellation of conferences and fundraisers, and the impact of COVID-19 on research and clinical trials. From a 2018 survey of our member organizations, we know that one in three have no paid staff and a working Board of Directors. These organizations are experiencing incredible demands on their infrastructure and capacity to serve their communities.

 

About NORD’s COVID-19 Rapid Response Leadership Series

NORD has developed a multi-faceted program to support patient organizations through providing education, training and resources to help with the additional challenges brought on by this pandemic. Topics covered in this program are informed by NORD’s expertise in capacity-building and nonprofit management, input from member organizations in NORD’s closed Facebook group,  and direct outreach. A critical component of this program is the timely cultivation and delivery of resources to ensure rare disease organizations remain solvent in this time of crisis.

 

COVID-19 Rapid Response Videos

Many patient organizations rely heavily on in-person fundraising events and activities to sustain their operating costs. It can be time-consuming and overwhelming for organizations to independently adjust their goals and fundraising strategies in the midst of a global public health crisis. We have cultivated content and identified experts to address these issues, working to ensure that rare disease patient organizations have timely access to this vital content that will help to ensure they maintain viability.

 

Tentative Rapid Response Video Topics:

  • NORD’s Virtual Platforms for Meetings, Fundraisers and Conferences – May 28
  • Fundraising in a Pandemic – June 4
  • Crisis Communications Sensitivity – June 11
  • Leader Roundtable: Virtual Platforms for Conferences – June 18
  • Activating Your Board in Crisis – July 8

 

Downloads and Resources

Coming soon!

 

Related Resources

NORD hosts monthly members-only webinars bringing expert speakers and fellow rare disease executive directors together to speak on capacity-building on topics like Board governance, fundraising, and working with a medical advisory board. Past webinars include:

 

NORD COVID-19 Nonprofit Webinars

NORD’s Membership Team has opened access to its monthly members-only webinars to all during this time of crisis; these recent presentations include:

 


COVID-19 Rapid Response Leadership Series program(s) were made possible by generous donations. Thank you to our sponsors.

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