Rareshare News Articles

May 2021 Newsletter

• The Diagnostic Odyssey
• Ethan and Me Podcast
• RareShare Disease Summaries

What disease do you have?  For many rare disease patients, that is not a simple question.  For some, it could take many years to get an answer.  For others, there never will be a clear diagnosis as they go through multiple referrals, inconclusive tests and sometimes erroneous classifications.  As cited in the UK Rare Diseases Framework, getting patients diagnosed faster may be the key to better outcomes.  Time is of the essence, as 50-70% of rare diseases affect children, and 30% of them may die before their fifth birthday.  With an estimated 350 million people worldwide impacted by a rare disease, the problem is large, but mostly invisible.  Rare diseases are under-treated because frequently medical providers don’t recognize what they are. 

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.

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

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. 

• Unrare Challenges
• COVID-19 Impact on Rare Disease Patients
• RareWear Program
• RareShare User Survey
• CBC Podcast Series

• Diagnosis by Crowdsourcing?
• KCNMA1-Linked Channelopathy Featured in Diagnosis
• DISORDER Comes to San Francisco
• Reach Out and Connect
• RareWear Survey Assesses Monitoring Needs
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• Serving the Undiagnosed
• Obtaining a Rare Diagnosis
• Rare Genomics Institute Partners with Genomenon on AI-Based Diagnostic Technology

• Stop Making Sense: Antisense Therapies for Rare Diseases Show Promise
• RGDI Promotes Drug Discovery
• Help RareShare and Rare Genomics better serve you by telling us about areas pertaining to rare diseases that interest you
• Participants rev up their enthusiasm for the Race for 7 Rare Disease Day fun run event
• Rare Genomics iHope Program Podcast

• Gene Repair Offers Hope and Challenges
• RareShare’s 10th Anniversary
• Rare Genomics Featured in German Documentary
• SUPERHERO FUNDRAISER
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• Using Computers To Repurpose Existing  Drugs in Treating Rare Diseases
• Joaquin's Update
• New Content on RareShare.org
• What is RGTF?
• There still is iHope...
• Attend a virtual rare disease conference
• RareShare Team Spotlight

• RARE DISEASE DAY 2018
• Gene Therapy Approvals Bring Hope to Rare Disorder Communities
• The Rare Genomics Task Force (RGTF)
• Did you know RareShare has a podcast channel?
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• DISORDER:  Rare Disease Film Festival
• iHope Continues for Rare Genomics Families
• RareShare Reaches Out
• Rare Genomics Institute Helps in Hailey-Hailey Disease Treatment Study
• Did you know RareShare has a podcast channel?
• Calling all Superheroes, help us reach our goal!

With the relaunch of RareShare.org, we would like our members to join in advancing the website’s vision. Our goal is to support new and existing communities to become an interactive experience rather than static online forums.  In order to achieve this, RareShare believes it will take a collaborative effort.  We can accomplish this by building even stronger relationships with our current community members and the volunteers who contribute their time and effort to building and maintaining the website.

• Our Vision
• Antidote on RareShare
• CoRDS Registry
• iHope

• Welcome to the new RareShare!
• RareShare is Part of the Rare Genomics Institute