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Editor’s Choice: The Songs and Stories of the Rare Disease Community

Editor’s Choice: The Songs and Stories of the Rare Disease Community

TGIF, everybody! This week we're sharing music videos by a singer who raises awareness for aHUS, a journey of a dysautonomia patient, and a story about a man who was…

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Lightning Can Knock Out Deep Brain Stimulators

Lightning Can Knock Out Deep Brain Stimulators

According to a story from Neuroscience News, the case of a woman with neck dystonia who was using a deep brain stimulation device called an implantable pulse generator (IPG) indicates…

Continue Reading Lightning Can Knock Out Deep Brain Stimulators
Patient Recall Affects Thousands After Neurologist’s Diagnoses Called in Question

Patient Recall Affects Thousands After Neurologist’s Diagnoses Called in Question

According to a story from The Independent, an NHS trust has issued a recall for around 2,500 patients after concerns were raised about the treatment they were receiving from senior…

Continue Reading Patient Recall Affects Thousands After Neurologist’s Diagnoses Called in Question
Research Has Revealed a Genetic Link to Aortic Aneurysms

Research Has Revealed a Genetic Link to Aortic Aneurysms

According to a story from news-medical.net, medical researchers have discovered that the gene called ari-1 can increase the risk aortic aneurysms. Previously, the precise genetic risk factors were not understood,…

Continue Reading Research Has Revealed a Genetic Link to Aortic Aneurysms
Scottish Mother Prepares to Obtain Cannabidiol Oil For Her Son With Rare Epilepsy

Scottish Mother Prepares to Obtain Cannabidiol Oil For Her Son With Rare Epilepsy

According to a story from edinburghnews.com, mother Karen Gray is about to seek access to cannabidiol oil for her five-year-old son, Murray, who has a rare type of epilepsy, Myoclonic Astatic…

Continue Reading Scottish Mother Prepares to Obtain Cannabidiol Oil For Her Son With Rare Epilepsy
Recent Research Has Led to a New Approach For Treating Huntington’s Disease

Recent Research Has Led to a New Approach For Treating Huntington’s Disease

According to a story from the National Center for Advancing Translational Sciences, a group of scientists from the National Institutes of Health (NIH) has unearthed a new mechanism that could…

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This Gene Could Play a Major Role in Progressive Supranuclear Palsy

This Gene Could Play a Major Role in Progressive Supranuclear Palsy

According to a story from asianscientist.com, a group of Japanese researchers have managed to unearth a genetic mutation that is associated with progressive supranuclear palsy. The discovery is helping scientists…

Continue Reading This Gene Could Play a Major Role in Progressive Supranuclear Palsy
A Young Girl With Mitochondrial Disease Sees Snow For the First Time

A Young Girl With Mitochondrial Disease Sees Snow For the First Time

According to a story from Central Texas News Now, a four-year-old girl with an extremely rare form of mitochondrial disease got her wish to see snow. The girl, Scarlett Landry,…

Continue Reading A Young Girl With Mitochondrial Disease Sees Snow For the First Time
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The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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