You’re not alone.

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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Join us at Week in RARE!

Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation.

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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