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
Patient recruitment for UC San Diego Danon Disease Study
RareShare consists of over 900 different rare disease communities, where individuals can learn, celebrate, empathize and share their experiences and knowledge to help others. This incredible initiative wouldn’t be possible without the countless hours devoted by the RareShare team.
In our latest podcast episodes we talk to the mother of a child with Atypical Hemolytic Uremic Syndrome about coping with a child's rare disease diagnosis.
Rare Genomics Task Force (RGTF) is Rare Genomics Institute's novel rare disease scientific consultation platform where you can have your questions answered by experts.
Do you have a story to share about coping with a rare disorder? Inspire others with your experiences by making a submission to Rare Genomics Institute's Share Your Rare Story program!
The New York Times Magazine’s long-running Diagnosis column, written by Dr. Lisa Sanders, has undertaken an exciting new crowd-sourcing experiment in which you— the reader— can write in to help diagnose patients dealing with real-time medical mysteries.
Check out recent rare disease news links on RareShare. Learn about specific diseases, latest treatments and how others cope with and succeed in facing enormous challenges associated with rare disorders. The news links are accessible through the Resources pull-down menu on the main RareShare page or on the front page after member login.
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.
It's free and easy to join RareShare.
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Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITY
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.