NORD RareLaunch®

RareLaunch® helps you launch and grow a rare disease nonprofit organization. We offer courses and resources for rare disease leaders to get started with forming a nonprofit organization and engage in rare disease research.

Access the NORD RareLaunch Program

Register and enroll in the Forming a Foundation and Research Ready RareLaunch Programs to access free, on-demand trainings, downloadable templates, and advice from nonprofit experts to launch your new foundation or support your organization with becoming ready to engage in research.

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Join our email list to be the first to know when new courses and resources are added.

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Sampling of Guides

  • Building Your Board Guide
  • Finding and Connecting With Others in the Rare Community
  • Herramientas de RareLaunch
  • IAMRARE Registry Program
  • How to Research Potential Members of Your Medical/Scientific Advisory Board
  • Research Ready Quick Reference Guide
  • Nonprofit Start-up Costs Guide
  • Fundraising Guide for New Nonprofits

Sampling of Templates

  • Board Electoral Process and Term Limits Language Template
  • Business Plan Template & Example
  • Bylaws General Nonprofit Structure Template
  • Confidentiality Policy Template
  • Medical Advisory Board Member Agreement Template
  • Medical Advisory Board Policies and Procedures Template
  • Operating Budget Template
  • Policy on Actual and Potential Conflicts of Interest Template

Sampling of Videos

  • Nuts & Bolts of Nonprofit Development: Understanding the Governance and Business Aspects of Your Nonprofit 
  • All A-Board: How to Identify and Recruit Board Members for Your Rare Nonprofit 
  • Representation Matters: Ensuring your Board & Work Reflect your Community 
  • The Impact of Research When Your Organization Drives It 
  • Research Standards & Best Practices 
  • Nothing about Us, without Us: The Community’s Role in Recruitment and Engagement for Research and Registries 
  • Using Registry Data to Empower your Organization and Engage with Researchers