Rare Life. Bonded Together

2022 RARE Patient Advocacy Summit

We’re celebrating being back together again, and have opportunities for you to join us in person or online for two days of connection opportunities, educational sessions, fun, and the RARE Champions of Hope Awards Ceremony and Dinner!

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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

7000

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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