Rareshare

Time 2020-10-11 21:07:13

Web Name: Rareshare

WebSite: http://www.rareshare.org

ID:78614

Keywords:

Rareshare,

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Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more 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. Parenting with a Rare Disease Child BlogPublication date: 16 Sep 2020What is it like to be a parent of a rare disease child? Your role is not limited to being a full-time parent.Read full articleAdvocacy groups for NGLY-1 deficiency, USP7, MEPAN and GRIN founded by highly motivated parents.Read full articleWe 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.Read full articleRARE with COVID registry for rare disease patients with COVID-19Publication date: 25 Jun 2020JoinRAREwithCOVID - A contact registry for Rare Disease patients with COVID-19.RAREwithCOVID is open to ANY Rare Disease patient who has or had COVID-19.Read full articleRareShare has recently become aware of a free genetic screening opportunity for neutropenia patients.Read full articleRareShare 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.Read full articleVisit our how-to guides page to find helpful guides on how to use the rareshare site.VISIT HOW-TO GUIDESVisit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.VISIT FAQOur CommunitiesJoin Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITYOur Community LeadersCommunity 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.MEET THE LEADERS

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