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: 2 Dec 2020
The University of Illinois at Chicago has produced a brief resource guide on Understanding the Pros and Cons of Genetic Testing.
Publication date: 16 Sep 2020
What is it like to be a parent of a rare disease child? Your role is not limited to being a full-time parent.
Publication date: 22 Aug 2020
Advocacy groups for NGLY-1 deficiency, USP7, MEPAN and GRIN founded by highly motivated parents.
Publication date: 11 Aug 2020
21 rare disease grants awarded to researchers.
Publication date: 1 Jul 2020
Community: Muckle-Wells Syndrome
We had the pleasure of speaking with Ian Stedman—a lawyer, a father of two, and a rare disease patient and advocate from Toronto. He has Muckle Wells Syndrome, which is a variant of Cryopyrin-Associated Periodic Syndrome, or CAPS. Ian speaks to his experience with the diagnoses, treatment, and general navigation of the health care system as a patient.
Publication date: 25 Jun 2020
Join RAREwithCOVID - A contact registry for Rare Disease patients with COVID-19.
RAREwithCOVID is open to ANY Rare Disease patient who has or had COVID-19.
Publication date: 23 Jun 2020
Community: Cyclic Neutropenia
RareShare has recently become aware of a free genetic screening opportunity for neutropenia patients.
Publication date: 17 Jun 2020
Community: Von Hippel-Lindau Disease
Von-Hippel Lindau Syndrome Patients or Caregivers Wanted for Paid Project
RareShare has been contacted by a market research group offering a paid opportunity for Von Hippel-Lindau patients and caregivers in Germany, France or the UK to share their experiences through an online digital journal or a web-cam based interview.
Visit our how-to guides page to find helpful guides on how to use the rareshare site.
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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.