A New, More Inclusive Membership Model for Global Advocacy Alliance Members

January 26, 2023

Recognizing the difficulties and challenges in accessing meaningful resources, tools, education, best practices, connection and funding, Global Genes is making engagement with patient advocates and the communities they serve, easier and more accessible to all.

In March of 2022, Global Genes announced the retirement of the Foundation Alliance and its rebirth as the Global Advocacy Alliance in an effort to enhance the benefits that Global Genes brings to its members.   

What is the GAA?
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.

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/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.

About the Global Advocacy Alliance Membership
A Global Advocacy Alliance membership is a free lifetime membership. You will not need to renew your membership each year, but you will be asked to update your account information on a yearly basis. This will 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. 

Benefits of being a Global Advocacy Alliance Member:
Eligibility for Global Genes grants Access to dedicated GAA member meetings at the Annual Summit and other Global Genes events
Two seats in the private Global Advocacy Alliance community in the Global Genes RARE Portal Two seats in the private Global Advocacy Alliance Facebook Group
Exclusive access to Global Genes RARE Lunch & Learns Membership acknowledgement on
Opportunity to have your rare disease awareness days/months on highlighted on Global Genes social media Opportunity to ‘Share Your Story’ as a featured member of the month
One-on-one meetings with members of the Global Genes staff to share updates about your work and find opportunities for collaboration Acknowledgement of your organization as a resource to your disease community through Global Genes RARE Concierge. 
Access to a Global Advocacy Alliance member badge to feature on your website or social media.  Opportunity to serve on the Global Advocacy Alliance Leadership Council for a two-year term. 

About Global Genes 

In January 2023, Global Genes merged with RARE-X with the goal of providing next-generation patient advocates with a continuum of services to accelerate the path from initial support and awareness through research readiness.To achieve this goal, Global Genes reassessed its current programs and services and established a new, joint mission statement:

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.

Complete our Global Advocacy Alliance Membership Form today and gain access to current benefits such as applying for grants, participating in to RARE Lunch & Learn events, high-touch communications from our Global Genes team, and more engagement with fellow Alliance members!

Become Global Advocacy    Alliance Member

Was your organization a part of the Foundation Alliance but unsure if you are a registered GAA member? Or any additional questions about the Global Advocacy Alliance Membership? Email our team at [email protected].

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