That Tingling in Your Feet Might Be GBS – Know the Symptoms
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That Tingling in Your Feet Might Be GBS – Know the Symptoms

Guillain-Barre syndrome (GBS) occurs when the body's immune system attacks the peripheral nerves, damaging the myelin insulation. Muscle weakness in the arms and legs are often the first signs of…

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Embracing the Beauty without Sugarcoating the Pain: Parenting a Child with SMS
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Embracing the Beauty without Sugarcoating the Pain: Parenting a Child with SMS

Who would think that missing a small amount of genetic information from one chromosome could alter someone’s life, and the life of their loved ones, so dramatically? For many parents,…

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Group Home Leaves Man with Cerebral Palsy Stranded in the Hospital
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Group Home Leaves Man with Cerebral Palsy Stranded in the Hospital

Cerebral palsy (CP) is caused by brain lesions that are non-progressive, meaning the lesions don't cause the brain to further deteriorate. It causes impairment of motor function—the ability to control motion…

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TRNDS Success!
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TRNDS Success!

On May 12th, 2017 the University of Rochester Medical Center hosted the first Technology and Rare Neurological Diseases Symposium (TRNDS). It successfully brought together patients, researchers, leaders in health technologies,…

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Why This Mom Chose “Bleeder Moms” Over Blood Relatives for Inspiration
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Why This Mom Chose “Bleeder Moms” Over Blood Relatives for Inspiration

I’ve had one hellofa tough day, but stopped abruptly with an attitude shift to feel inspired after reading an uplifting article which I know will inspire tons of moms in…

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Hemochromatosis – When the Body Can’t Get the Iron Out
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Hemochromatosis – When the Body Can’t Get the Iron Out

Most of us know that not having enough iron in the blood results in disorders like anemia, fatigue, low energy… I first became aware of “iron-poor blood,” or anemia, when…

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People with Tuberous Sclerosis Complex May Have New Hope
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People with Tuberous Sclerosis Complex May Have New Hope

Every year, actually every day, the FDA and similar organizations for other countries approve new medicines. Innumerable pharmaceutical companies work tirelessly for years to research, develop, test, distribute, and market…

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Baheti: Running the Boston Marathon While Living with Stargardt’s Disease
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Baheti: Running the Boston Marathon While Living with Stargardt’s Disease

About four years ago, Sagar Baheti found out he had an eye condition called Stargardt disease. Initially, he was not alarmed by the small symptoms that indicated Stargardt. He did…

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New Study May Shed Light on Possible Neurodegenerative Disease Treatment Understanding
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New Study May Shed Light on Possible Neurodegenerative Disease Treatment Understanding

A study published in April has found a link between neurological birth defects in infants and several neurodegenerative diseases, which may help understanding and treating diseases such as Alzheimer's, Parkinson's…

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How to Relieve Stress by Joining with Other Women in the Hemophilia Community
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How to Relieve Stress by Joining with Other Women in the Hemophilia Community

On Saturday, April 29, 2017, a special event took place to honor women in the hemophilia community living in Idaho. Way to go, Idaho Chapter of the National Hemophilia Foundation! How…

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Have you heard? Mark Your Calendar for this Ovarian Cancer Support Event
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Have you heard? Mark Your Calendar for this Ovarian Cancer Support Event

June is hectic, with all those weddings and graduations. July is loud—firecrackers, political conventions, family reunions—and the humidity is stifling. But August, dear sweet lovely August? It might just be…

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Great News for the HD Community: A New Treatment is Approved!
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Great News for the HD Community: A New Treatment is Approved!

More than 35,000 Americans suffer from Huntington's disease (HD), a neurodegenerative disease. Eventually, HD destroys a person's ability to walk, talk, swallow, or have meaningful relationships with friends and family. Chorea is…

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Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood
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Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood

Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…

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