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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.

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Create a sense of community for those affected by rare disorders

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Communicate with others that are affected by the same condition

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

Rareshare news

News articles related to Rareshare and Rareshare communities


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Parenting with a Rare Disease Child Blog

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.


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Rare Advocates

Publication date: 22 Aug 2020

Advocacy groups for NGLY-1 deficiency, USP7, MEPAN and GRIN founded by highly motivated parents.


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Rare Genomics Institute announces its 2020 BeHEARD grant winners

Publication date: 11 Aug 2020

21 rare disease grants awarded to researchers.


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CAPS—Patient Interview with Ian Stedman

Publication date: 1 Jul 2020

Community: Muckle-Wells Syndrome

Video Interview

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.


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RARE with COVID registry for rare disease patients with COVID-19

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. 

 


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Neutropenia Patient Testing

Publication date: 23 Jun 2020

Community: Cyclic Neutropenia

Newsletter

RareShare has recently become aware of a free genetic screening opportunity for neutropenia patients.


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Von-Hippel Lindau Syndrome Patients or Caregivers Wanted for Paid Project

Publication date: 17 Jun 2020

Community: Von Hippel-Lindau Disease

Newsletter

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. 


View all Rareshare news

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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.