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.

Learn More

Stay Up to Date on New Courses

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

Learn More

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