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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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Do you have a story to share?

Publication date: 12 Mar 2021

Tell your story in a RareShare podcast or newsletter article.


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Rare Disease Day 2021

Publication date: 3 Mar 2021

Newsletter

Rare Disease Day is observed on the last day of February every year.  It reminds us of the challenges faced by rare disease patients everyday worldwide and inspires us to redouble our efforts to make their lives better.


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Access Mediaplanet's Rare Disease Day Campaign

Publication date: 27 Feb 2021

Mediaplanet UK/Ireland invites you to access a collection of stories about rare disease challenges, treatment and care as part of its Rare Disease Day campaign. The need for better therapeutics is critically important, as stated by Jayne Spink of the Genetic Alliance UK, "Less than 5% of the more than 6,000 rare diseases currently have an available medicine." To read more, follow the online link referenced below on or after March 1.


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Petition Congress to Help Experts Accelerate Rare Treatments

Publication date: 20 Feb 2021

The Familial Chylomicronemia Syndrome (FCS) Foundation is asking those interested in rare diseases to support the HEART (Helping Experts Accelerate Rare Treatments) Act by petitioning their U.S. Congressional representatives. The bill is designed to ensure that rare disease experts and patients are involved in the drug review process for rare disease therapeutics.


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Add your story to Rare Genomics "I am rare because..." blog.

Publication date: 15 Feb 2021

Every rare disease patient or family has an unique story to tell about coping with challenges for a condition that few have heard about. Share yours in a Rare Genomics Institutes blog commemorating Rare Disease Day.


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Rare Diseases as Pre-Existing Conditions

Publication date: 11 Dec 2020

Most rare diseases are “pre-existing” conditions. Depending upon where you live and your financial circumstances, this may disqualify you from health insurance benefits and continuous medical treatment. At face value, this is an absurdity. Many diseases, not just rare ones, manifest themselves over years. This includes cancer, heart disease, diabetes, high blood pressure, allergies to name a few. Initiating treatment of such diseases at their most acute symptomatic phase is often too late and ignores the fact that preventative measures could have been taken.


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Meet the Rareshare Team

Publication date: 9 Dec 2020

Podcast

This episode features RareShare itself, and discuss various topics ranging from its goals and how to utilize its networking and informational content. We hope to provide you with a brief, but comprehensive view of the website's features, the diverse and driven volunteers who make this work, and a glimpse of our future plans


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Understanding the Pros and Cons of Genetic Testing

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.


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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.


View all Rareshare news

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