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
Publication date: 21 May 2020
Publication date: 14 May 2020
Online survey seeks to find out how COVID-19 is impacting rare disease patients.
Publication date: 27 Apr 2020
Publication date: 28 Mar 2020
Multiple reports urge practicing COVID-19 community precautions to prevent exposure of rare disease patients with elevated risks.
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.
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.
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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.