Global Advocacy Alliance website

The Global Advocacy Alliance may be a new name, but it’s a rebirth of the Foundation Alliance that many groups belonged to previously. Global Advocacy Alliance is a global community changing the way the world tackles rare disease by collaborating to realize positive change. Together, members can connect, empower and inspire the rare disease community.

Joining the Global Advocacy Alliance will allow your group to enjoy added benefits, high touch communications from our Global Genes team, and more engagement with fellow Alliance members since updates will be more accurate and frequent with paid memberships.

In an effort to consolidate the work that Global Genes does for members, the Foundation Alliance will be retired, and all membership services will be focused on benefits that Global Advocacy Alliance provides, such as applying for grants and access to RARE Lunch & Learn events.

Who can join Global Advocacy Alliance?

To enjoy the benefits of the Global Advocacy Alliance, your organization must be a support group, U.S. Foundation with 501(c)(3) status or international foundation, and be able to provide access to information through a website or active Facebook page, offering 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.

About the Global Advocacy Alliance Membership

A Global Advocacy Alliance membership is an annual membership, which ends 365 days from your sign-up date. You will need to renew your membership each year before your membership expires to avoid losing membership benefits.

Benefits of being a Global Advocacy Alliance Member:

  • Official Alliance Member 
  • Network with a global community on our Facebook group
  • Monthly Newsletters
  • Receive discounts for Global Genes Events 
  • Your organization listed on Global Genes website 
  • Eligibility for all Global Genes open grants
  • Access to Rare Concierge 
  • Access to Global Genes Partners, Initiatives or Tools to assist your organization with your goals and needs
  • Dedicated Global Advocacy Alliance members meeting at the Annual Summit, Health Equity Summit 
  • Opportunity to be a Global Genes Ambassador at other rare meetings, access to social media engagement 
  • Participate in research that can bring about change to rare disease patients/communities 
  • Train to become an empowered patient advocate and build your organization’s capacities
  • Opportunities for mentorship
  • Access to RARE Portal where you can: 
    • Network with your peers, worldwide.  
    • Find and share resources  
    • Collaborate and initiate discussions with other rare disease stakeholders
    • Decide what personal data you want to share with the community. 
    • Make meaningful connections with others who share a similar health journey. 
    • Ability to post anonymously
    • Easily share (and search archives of) files, Word, Excel, PPT, pdf, mov, etc.

Become a Founding Member For Additional Benefits

Join before May 31, 2022, and Founding Members will enjoy these benefits:

  • Lifetime Founding Member, as long as membership does not lapse
  • Social media mention the week a new member join
  • Included in a weekly social media mention
  • Discount for Patient Advocacy Summit
  • Alliance Members Badge to use on your organization’s website and for use on our RARE portal.

Membership Annual Cost

Membership fees are based on the organization’s annual gross revenue – see website for the cost structure. All funds that come in through Global Advocacy Alliance memberships will be funneled back to the Alliance – whether through grants to organizations or to support programming and resources for members.

Become Global Advocacy Alliance Member

Questions about the Global Advocacy Alliance Membership?
Email our team at [email protected].

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