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When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare disease. Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases.

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Empowering the Next Generation Rare Disease Advocate

Global Genes and RARE-X have been working toward the goal of empowering the next generation advocate both through their individual initiatives and their strategic partnership announced in 2021. In fact, RARE-X was born out of Global Genes after discussions with advocacy leaders, board members, partners, patients, and care partners, addressing a significant gap in access to tools, technology, and infrastructure.

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Impact at a glance

Quick facts on the effects of rare disease

Learn More Facts About Rare Diseases

Distinct types of Rare and Genetic Diseases


Million People Suffer From a Rare Disease Globally

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Patients Diagnosed with a Rare Disease is a Child

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Children with a Rare Disease Won’t Live to See Their 5th Birthday

Search the RARE List

For more resources, disease-specific information, and news,  search our RARE List- an extensive list of rare diseases and rare conditions.

Search Our Full RARE List

Rare Concierge

Try our free one-on-one service for patients looking for information and resources on their rare disease.

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