Partners in Action

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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Empower

RARE Diseases List

We have nearly 6,000 rare disease indexed with information, trials, news, support organizations and more.

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Resource Hub

Visit the resource hub to download toolkits, watch webinars, and get information on important topics like gene-based diagnosis, financial advocacy, drug development, and more.

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RARE Concierge

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

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Inspire

RARE Daily

Rare Disease Dealmaking Heats Up in August

Rare disease drug developers maintained a steady lead in their financing and dealmaking numbers through August, with dealmaking heating up

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Together We Can Change Lives

10,000

Distinct Types of Rare and Genetic Diseases

400

Million People Suffer From a Rare Disease Globally (greater than the population of the U.S.)

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

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Patients Diagnosed with a Rare Disease is a Child

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