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Rareshare News Articles

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CAPS—Patient Interview with Ian Stedman

Publication date: 1 Jul 2020

Community: Muckle-Wells Syndrome

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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

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Listen to the first episodes of the Canadian Broadcasting Company podcast series on Unlocking Bryson's Brain

Publication date: 11 Mar 2020

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Rare Genomics Institute Announces its 2020 BeHEARD Rare Disease Science Technology Grants for Researchers, Foundations and Doctors

Publication date: 3 Mar 2020

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Diagnosed with a rare disease, fired from a job, graduating from law school and becoming a rare disease advocate, Candace Lerman tells her story in an inspirational podcast.

Publication date: 22 Jan 2020

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Don’t Sell Yourself Short: Having a Career after a Rare Disease Diagnosis

Publication date: 22 Jan 2020


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Diagnosis by Crowdsourcing?

Publication date: 10 Dec 2019

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KCNMA1-Linked Channelopathy Featured in Diagnosis

Publication date: 10 Dec 2019

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December 2019 Newsletter

Publication date: 10 Dec 2019


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How to Use the RareShare Network for Rare Disease Patients

Publication date: 30 Oct 2019

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RareWear Survey Assesses Monitoring Needs

Publication date: 23 Oct 2019

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How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF)

Publication date: 27 Aug 2019


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August 2019 Newsletter

Publication date: 25 Aug 2019