RARE Portal

The RARE Portal is a community for patients, caregivers, members of non-profit patient advocacy organizations, and academia

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Take Advantage of Everything the RARE Portal Has to Offer

Robust Profile

Robust Profile

Customize your rare disease affiliations, your role in the rare disease community, and create a short bio to find relevant news and resources quicker and make connections faster.

Worldwide Connections

Make meaningful connections with others who are experiencing a similar health journey. Connect with your peers based on geographic location, diagnosis, symptoms, job title, organization type and more.

Discussion Groups

Discussion Groups

Engage in meaningful conversations and discussions through the General Discussion Zone, as well as private members-only discussion groups. Browse discussions dedicated to important topics in rare disease such as Financial Advocacy, Diversity and Health Equity, or Gene Based Diagnosis.

Resources icon


Upload and showcase your/your organization’s top resources and access Global Genes’ database of 600+ free resources.

Share your story

Inspiring Stories

Share personal stories to support one another. Read patient stories and be inspired.



View upcoming events, view event details, and share your own events with the rare disease community.

Are you corporate, industry, or media?

If you are a corporate, industry, or media representative please contact [email protected] to learn how you can participate in the RARE Portal and partner with Global Genes.

Do you have feedback and suggestions for the RARE Portal?

We’d love to hear from you. Global Genes is committed to making this a user-friendly space to advance knowledge and skills in rare disease. Contact Us