Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

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.

Community icon

Create a sense of community for those affected by rare disorders

Discussion icon

Communicate with others that are affected by the same condition

Resource icon

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

Rareshare news

News articles related to Rareshare and Rareshare communities


KCNMA1-Linked Channelopathy Featured in Diagnosis

View more...


Diagnosis by Crowdsourcing?

View more...


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.

View more...


RareWear Survey Assesses Monitoring Needs

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

View more...


Disorder: The Rare Disease Film Festival Scheduled for Boston and San Francisco

Short films on rare diseases will be presented at the Disorder film festival in Cambridge, MA on September 12, 2019 and in San Francisco, CA on November 9-10, 2019.

View more...


Obtaining a Rare Diagnosis

Stanford UDN diagnoses two brothers with MEPAN Syndrome.

View more...


Serving the Undiagnosed

Undiagnosed Diseases Network takes on challenge of rare disease diagnosis.

View more...


View all Rareshare news

Need Help?


Need help with the site?

Visit our how-to guides page to find helpful guides on how to use the rareshare site.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

DON'T HAVE AN ACCOUNT? BECOME A MEMBER

It's free and easy to join RareShare.

SIGN UP NOW

INTERESTED IN CONTACTING RARESHARE?

Contact Us
Communities

Our Communities

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

FIND YOUR COMMUNITY
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.