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Grow your organization

NORD works closely with new and existing patient organizations. We help them promote best practices in governance and management, innovation in patient/family services, and advocacy that is deeply rooted in integrity. In serving patient communities that often struggle with very significant challenges, patient organizations must balance the challenge of meeting today’s needs and evolving to meet those of the future.

NORD staff members welcome the opportunity to share their experiences and advice with leaders of rare disease patient organizations. We are able to help organizations at all levels of their development from the initial launch to those who are engaging in strategic growth after years of operation.

Available Resources

We offer toolkits and articles, capacity building workshops and webinars related to best practices from across the community. While some of these resources are free, the full range of our services and programs are only available to NORD members.

The following materials are provided for free to help leaders of patient groups build and grow their organizations:


NORD Member Organizations, please contact [email protected] for additional resources and information:

  • Fiscal responsibility
  • Patient advocacy
  • Nonprofit governance
  • Development

Other Types of Guidance

NORD also provides strategic guidance related to:

  • Website content
  • Social media marketing
  • Events fundraising
  • Grant research and writing
  • Board governance and expectations
  • Patient and caregiver resources
  • Physician resources