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Launch an organization

Since NORD was established in 1983, we have promoted mentoring, networking and knowledge-sharing to build strong, independent rare disease patient organizations.

RareLaunch™ seeks to formalize these long-standing mentoring programs. RareLaunch™ focuses on the disease states that do not currently have an organization and utilizes NORD’s knowledge to help establish one. The goal is to create independent and fully- sustainable 501c(3) organizations.

Available Resources:

NORD can provide strategic guidance during the early stages of establishing a new non-profit.

  • Understanding the dynamics of a rare disease patient organization
  • Incorporating a nonprofit organization
  • Defining a management and governance structure
  • The importance of a mission, vision and core belief statement

Free tools

All individuals interested in starting a non-profit can take advantage of the free tools related to launching and growing an organization by visiting our Grow Your Organization Page >

Patient leaders interested in additional guidance as they go through the establishment of their organizations may fill out this form and a member of our staff will contact you shortly.