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Rareshare News Articles

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Do you have a story to share?

Publication date: 12 Mar 2021


Rare Disease Day 2021

Publication date: 3 Mar 2021


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Access Mediaplanet's Rare Disease Day Campaign

Publication date: 27 Feb 2021

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Petition Congress to Help Experts Accelerate Rare Treatments

Publication date: 20 Feb 2021

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

Publication date: 15 Feb 2021

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Rare Diseases as Pre-Existing Conditions

Publication date: 11 Dec 2020

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Meet the Rareshare Team

Publication date: 9 Dec 2020


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Understanding the Pros and Cons of Genetic Testing

Publication date: 2 Dec 2020

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Parenting with a Rare Disease Child Blog

Publication date: 16 Sep 2020

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Rare Advocates

Publication date: 22 Aug 2020

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Rare Genomics Institute announces its 2020 BeHEARD grant winners

Publication date: 11 Aug 2020

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CAPS—Patient Interview with Ian Stedman

Publication date: 1 Jul 2020

Community: Muckle-Wells Syndrome

Video Interview


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

Publication date: 25 Jun 2020

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Neutropenia Patient Testing

Publication date: 23 Jun 2020

Community: Cyclic Neutropenia



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

Publication date: 17 Jun 2020

Community: Von Hippel-Lindau Disease



NORD launches program to assist rare disease patients impacted by COVID-19

Publication date: 21 May 2020

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NIH-Supported Survey on Impact of COVID-19 on Rare Disease Patients

Publication date: 14 May 2020

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April 2020 Newsletter

Publication date: 27 Apr 2020


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Unrare Challenges

Publication date: 26 Apr 2020

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COVID-19 may present elevated risks for some rare disease patients

Publication date: 28 Mar 2020