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Daily Archives: February 2, 2021

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Man Raises Money for SPS Through a 24 Day Run

Man Raises Money for SPS Through a 24 Day Run

  • Post author:Kendall Mason
  • Post published:February 2, 2021
  • Post category:Stiff Person Syndrome

Shane James has recently completed a 24-day long run to fundraise for the Stiff Person Syndrome Research Foundation, earning about $20,000 by the end of his trek. The run, called…

Continue Reading Man Raises Money for SPS Through a 24 Day Run
New Rare Disease Framework in the UK Will Improve Care
derwiki / Pixabay

New Rare Disease Framework in the UK Will Improve Care

  • Post author:Kendall Mason
  • Post published:February 2, 2021
  • Post category:Rare Disease

The UK has recently began the practice of the new UK Rare Disease Framework, a government effort that aims to spread awareness, quicken the diagnostic process, and improve treatment and…

Continue Reading New Rare Disease Framework in the UK Will Improve Care
NKCC1 May Worsen NGLY1 Deficiency Severity
nuzree / Pixabay

NKCC1 May Worsen NGLY1 Deficiency Severity

  • Post author:Jessica Lynn
  • Post published:February 2, 2021
  • Post category:Rare Disease

Since Bertrand Might was first diagnosed with NGLY1 deficiency in 2012, medical research around this extremely rare genetic condition has expanded. Unfortunately, Bertrand passed away in October 2020. However, his…

Continue Reading NKCC1 May Worsen NGLY1 Deficiency Severity
What Parkinson’s Disease and COVID-19 Have in Common

What Parkinson’s Disease and COVID-19 Have in Common

  • Post author:Trudy Horsting
  • Post published:February 2, 2021
  • Post category:COVID-19/Parkinson's Disease

Parkinson's Disease Parkinson's disease is a condition which affects the nervous system. The progressive disease influences movement, and can lead to a wide array of symptoms. These may include- Tremors Stiffness…

Continue Reading What Parkinson’s Disease and COVID-19 Have in Common
Commentary Advocates for Improvements in Cerebral Palsy Care
adamtepl / Pixabay

Commentary Advocates for Improvements in Cerebral Palsy Care

  • Post author:Jessica Lynn
  • Post published:February 2, 2021
  • Post category:Cerebral Palsy

Recently, research professors from Michigan Medicine - the University of Michigan shared new commentary around cerebral palsy. Specifically, the commentary focuses on current research, policies, and care associated with adults…

Continue Reading Commentary Advocates for Improvements in Cerebral Palsy Care
How This Diet Slows The Progression of Chronic Kidney Disease

How This Diet Slows The Progression of Chronic Kidney Disease

  • Post author:Sunniva Bean
  • Post published:February 2, 2021
  • Post category:Chronic Kidney Disease

As published in the NIH; the NIH is encouraging people with chronic kidney disease (CKD) to consider following a careful diet. They’re not seeking a summer body though. The rare…

Continue Reading How This Diet Slows The Progression of Chronic Kidney Disease
February 2nd is Neuroblastoma Awareness Day: Spreading Pediatric Cancer Awareness
source: pixabay.com

February 2nd is Neuroblastoma Awareness Day: Spreading Pediatric Cancer Awareness

  • Post author:James Moore
  • Post published:February 2, 2021
  • Post category:Neuroblastoma

February 2nd is recognized annually as Neuroblastoma Awareness Day, which is intended to help spread knowledge and visibility about neuroblastoma, a rare cancer that mostly affects children, among the general…

Continue Reading February 2nd is Neuroblastoma Awareness Day: Spreading Pediatric Cancer Awareness
Living with Gastrointestinal Stromal Tumors: A Rare Patient Story

Living with Gastrointestinal Stromal Tumors: A Rare Patient Story

  • Post author:Patient Worthy Contributor
  • Post published:February 2, 2021
  • Post category:Gastrointestinal Stromal Tumors

Rebecca Newsome lives with a rare form of cancer called gastrointestinal stromal tumors (GISTs). In this story, she talks about her experiences as a patient in a question-and-answer format. What…

Continue Reading Living with Gastrointestinal Stromal Tumors: A Rare Patient Story

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