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Daily Archives: April 4, 2017

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Awake and Unable to Move: Woman with Cataplexy Describes Her Experience
https://pixabay.com/en/tree-hill-vines-landscape-mood-207584/

Awake and Unable to Move: Woman with Cataplexy Describes Her Experience

  • Post author:Alisha Stone
  • Post published:April 4, 2017
  • Post category:Narcolepsy

If you or your loved one has cataplexy, I definitely suggest you read this post, written by a young woman who’s living with it. I say “living with it” vs.…

Continue Reading Awake and Unable to Move: Woman with Cataplexy Describes Her Experience
Does Palliative Care Have a Role in Living with Rare Disease?
https://pixabay.com/en/treatment-finger-keep-hand-wrist-1327811/

Does Palliative Care Have a Role in Living with Rare Disease?

  • Post author:PW Blogger
  • Post published:April 4, 2017
  • Post category:Cystic Fibrosis/Rare Disease

What comes to mind when you hear "palliative care?" Most people might think it only helps someone with end-of-life care. But did you know that palliative care can actually lift spirits…

Continue Reading Does Palliative Care Have a Role in Living with Rare Disease?
DBS Proves Successful for People Living with Tourette Syndrome
https://pixabay.com/en/brain-mind-psychology-idea-hearts-2062048/

DBS Proves Successful for People Living with Tourette Syndrome

  • Post author:Nia
  • Post published:April 4, 2017
  • Post category:Rare Disease/Tourette syndrome

Jamie has been living with Tourette syndrome, so bad that she was not able to perform many of her daily activities. She would often avoid going to places outside of her…

Continue Reading DBS Proves Successful for People Living with Tourette Syndrome
How the FDA Approves Drugs
https://pixabay.com/en/drugs-capsule-pill-medicine-2031442/

How the FDA Approves Drugs

  • Post author:Al Pendleton
  • Post published:April 4, 2017
  • Post category:paroxysmal nocturnal hemoglobinuria/Timely

The U.S. Food and Drug Administration (FDA) is quite an impressive agency. They regulate the safety and security of all foods that are produced, imported, or created in any other…

Continue Reading How the FDA Approves Drugs
Are You a Sickle Cell Caregiver? Check This Out!
https://pixabay.com/en/hands-holding-embracing-loving-718562/

Are You a Sickle Cell Caregiver? Check This Out!

  • Post author:Sabina Kennedy
  • Post published:April 4, 2017
  • Post category:Sickle cell anemia

Caregivers or care partners are often family members or friends who provide important physical, practical, and emotional support to a person with health issues such as sickle cell disease. Caregivers…

Continue Reading Are You a Sickle Cell Caregiver? Check This Out!
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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