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WHY RARE DISORDERS?

Even though there are 7,000 known rare conditions, many of the 300 million affected patients around the globe feel alone. RareShare was founded in 2008 to give these people and their loved ones a sense of community; a place to sympathize, celebrate, and share their experiences and expertise, together.

WHY RARESHARE?

RareShare is built on a premise that sharing information is good, especially when it comes to information about rare diseases. The more you share the more you have an opportunity to help others whose lives have been touched by rare disease. By joining our community of support and sharing information about your experience, you will help others, including researchers, better understand your disease. Please keep in mind that the content and extent to which you share is ultimately your choice and responsibility.

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Create a sense of community for those affected by rare disorders

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Communicate with others that are affected by the same condition

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Contribute condition-related information, experiences, support, and resources

Rareshare news

News articles related to Rareshare and Rareshare communities


COVID-19 may present elevated risks for some rare disease patients

Multiple reports urge practicing COVID-19 community precautions to prevent exposure of rare disease patients with elevated risks.

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Preview of upcoming Canadian Broadcasting Company podcast on Unlocking Bryson's Brain

Thirteen year-old Bryson has a rare neurodevelopmental disease. Genetic scientists believe they know what's causing it—and think it could be reversed.
Join Bryson's dad—host Keith McArthur—on his search for answers in the upcoming podcast: Unlocking Bryson's Brain.

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Rare Genomics Institute Announces its 2020 BeHEARD Rare Disease Science Technology Grants for Researchers, Foundations and Doctors

Washington, D.C. February 28, 2020. The Rare Genomics Institute (RG) announces the BeHEARD (Helping Empower and Accelerate Research Discoveries) Initiative, an annual rare disease science challenge providing technology grants for rare disease research. The RG-hosted contest is aimed at accelerating rare disease research and offering new options for millions of patients suffering from ailments that lack effective treatments.

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Diagnosed with a rare disease, fired from a job, graduating from law school and becoming a rare disease advocate, Candace Lerman tells her story in an inspirational podcast.

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Rare Disease Week on Capitol Hill, February 25-28

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KCNMA1-Linked Channelopathy Featured in Diagnosis

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Diagnosis by Crowdsourcing?

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How to Use the RareShare Network for Rare Disease Patients

Learn how to sign up for RareShare and join communities so you can connect with other rare disease patients, share your experiences, and support each other.

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RareWear Survey Assesses Monitoring Needs

Rare Genomics Institute's RareWear initiative seeks to connect medical device developers with rare disease patients.

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Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

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Our Resources

Our rare disease resources include e-books and podcasts

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Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.