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


1

NORD launches program to assist rare disease patients impacted by COVID-19

Publication date: 21 May 2020

In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program.


Rdpatientsurvey 640x326

NIH-Supported Survey on Impact of COVID-19 on Rare Disease Patients

Publication date: 14 May 2020

Online survey seeks to find out how COVID-19 is impacting rare disease patients.


C153952f 8bda 44a7 913e cf1f650deaf1 copy

April 2020 Newsletter

Publication date: 27 Apr 2020

Newsletter

  • Unrare Challenges
  • COVID-19 Impact on Rare Disease Patients
  • RareWear Program
  • RareShare User Survey
  • CBC Podcast Series


Default article

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

Publication date: 28 Mar 2020

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


Content unlockingbrysonsbrain 650

Listen to the first episodes of the Canadian Broadcasting Company podcast series on Unlocking Bryson's Brain

Publication date: 11 Mar 2020

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 an 8-part podcast series: Unlocking Bryson's Brain.  Hear a very personal in-depth account of a rare disease family's ordeal in facing the unknown, obtaining a diagnosis and finding hope.  Episodes 1 and 2 were posted on April 14th.


Image asset

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

Publication date: 3 Mar 2020

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.


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.