RARE Foundation Alliance™

The RARE Foundation Alliance is a coalition of over 300 rare disease organizations that understand that together we are more powerful.

“The Power of the Collective Impact”

Global Genes Foundation Alliance partners exchange best practices and share lessons learned to drive better outcomes for the entire rare disease community. Global Genes aims to provide a culture of collaboration to support the activities of the RARE Foundation Alliance.  Through the creation of an information exchange, we give rare organizations the opportunity to become stronger in many areas including:

• Marketing
• Research
• Business Development
• Networking
• Public Policy
• Scientific Advancement
• Education
• Family and Patient Support
• Resources


To discover more about the program and membership benefits, please download this presentation.


Member Benefits

RARE Foundation Alliance membership provides access to effective strategies, tools, and resources to help build your foundation’s capacity.

  • Exclusive access to RARE Foundation Alliance Networking and Sharing:
    • Quarterly Foundation Alliance webinars to share rare industry updates, initiatives, resources, and expert speakers.
    • Private Facebook for foundation leadership discussions.
    • Members-only website
    • Technology support for one patient/family-focused educational content webinar.
    • Priority registration for Global Genes’ Advocacy Events
      • RARE Patient Advocacy Summit – September 22-23, 2016
      • RARE Tribute to Champions of Hope Gala –September 24, 2016
  • RARE Patient Impact Grant Program:  Exclusive annual opportunity for RARE Foundation Alliance partners and RARE support groups
  • Promotional opportunity for your Foundation:  Events and breaking news shared with the RARE community in various Global Genes outlets including RARE Daily, social media, and RARECast podcast.
  • One-on-one Global Genes’ support:  Personal contact with the Global Genes advocacy team to answer your questions and connect you to Global Genes’ and partner resources.

Member Eligibility

  • Provide access to information through a website or active Facebook page*
  • Offer rare disease information or support in one or more of the following areas:
    • Patient / Caregiver support
    • Healthcare provider education
    • Public awareness and advocacy
    • Research

* Websites and Facebook pages focusing on a specific patient or family’s journey are not eligible

Member Commitment

  • Actively engage in discussions about best practices, community challenges and lessons learned
  • Willingness to partner with Global Genes on rare disease focused initiatives
  • Share relevant educational resources (toolkits, webinars, initiatives) with your rare disease community
  • Prominently display RARE Foundation Alliance badge on website and share in any additional venues as appropriate
  • List Global Genes as a resource on organization’s website
  • Participate in half of the quarterly membership webinar calls
  • Provide a primary contact person who is an active member of the organization’s leadership

To apply, click the Foundation Alliance “Join Now” link at the top right of this page. If you would like more information about this program, please contact Carrie Ostrea, Global Genes Senior Patient Advocacy Manager.

Click here to view our Foundation Alliance Member List