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.
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.
Create a sense of community for those affected by rare disorders
Communicate with others that are affected by the same condition
Contribute condition-related information, experiences, support, and resources
News articles related to Rareshare and Rareshare communities
Stanford UDN diagnoses two brothers with MEPAN Syndrome.
Undiagnosed Diseases Network takes on challenge of rare disease diagnosis.
Our Odyssey, a meet-up for young adults facing challenges from rare or chronic conditions, takes place in Washington, DC on September 8, 2019.
Diagnosis, a New York Times produced documentary featuring Yale physician Dr. Lisa Sanders premiers on Netflix on August 16 https://www.netflix.com/title/80201543.
Listen to our latest podcast, 3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis, located in the podcast section of this website.
To support research leading to a cure for Friedreich's Ataxia, several fundraising cycling events are being held across the U.S
Visit our how-to guides page to find helpful guides on how to use the rareshare site.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
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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 rare disease resources include e-books and podcasts
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.