About Us

Global Advocacy Alliance

We are a global community changing the way the world tackles rare disease.

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The Global Advocacy Alliance is a global community of non-profit organizations and support groups who are committed to changing the way the world tackles rare diseases by collaborating to realize positive change. Together, members can connect, empower and inspire the rare disease community. 

Joining the Global Advocacy Alliance will allow non-profit and rare disease support groups to enjoy added benefits, high-touch communications from our Global Genes team, and more engagement with fellow Global Advocacy Alliance members.


To enjoy the life-time benefits of the Global Advocacy Alliance, your organization must be a support group, U.S. Foundation with 501(c)(3) status or international foundation/registered charity and offer rare disease information or support in one or more of the following ways: patient/caregiver support, healthcare provider education, public awareness and advocacy and/or research. 

Global Advocacy Alliance Benefits

  • Official Alliance Member
  • Network with a global community on our Facebook group
  • Monthly GAA Newsletters
  • Receive Discounts for Global Genes Events
  • Your Organization listed on Global Genes website
  • Eligibility for all Global Genes open grants
  • Access to Global Genes Partners, Initiatives or Tools to assist your organization with your goals and needs
  • Dedicated GAA members meeting at the Annual Health Equity Summit
  • Participate in research that can bring about change to rare disease patients/communities
  • Train to become an empowered patient advocate and build your organizations capacities
  • Opportunities for mentorship
  • Opportunity to be a GG Ambassador at other rare meetings, access to social media engagement
  • Unique benefits of community group on Facebook

Once your organization completes the membership application, you’re a member for life!

All we ask is that you update your contact information. A form will be sent to you via email on a yearly basis so we can ensure we’re able to reach your organization, share relevant up-to-date information and refer patients, families and caregivers to you for support, education, etc.

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Current Foundation Alliance Members

To continue uninterrupted access to all current benefits, including grant eligibility, event discounts, and access to Global Genes Partners, Initiatives, or Tools to assist your organization with your goals and needs, you will need to join the Global Advocacy Alliance.

Foundation Alliance members will still have access to the Facebook Group. All other previous benefits will only be available to members of the Global Advocacy Alliance.

Questions about Membership?

Email our team at [email protected].