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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


Rare Disease Day 2018

On February 28th, worldwide activities promoting awareness of rare diseases converged on Rare Disease Day. Held on the 28th of February, except for leap years when it is held on the 29th, Rare Disease Day was started by Eurordis, a European rare disease organization.

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Gene Therapy Approvals Bring Hope to Rare Disorder Communities

Gene therapy, one of the most highly touted treatments in medicine, took major steps forward after decades of unfilled promise. Over the past several months, the U.S. Food and Drug Administration (FDA) has approved three gene therapies – the first two for forms of cancer and the third for people with certain inherited forms of vision loss or blindness.

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Communities

Our Communities

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

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Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

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.