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Daily Archives: July 20, 2018

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Editor’s Choice: Combating Isolation and Finding Purpose with Rare Disease

Editor’s Choice: Combating Isolation and Finding Purpose with Rare Disease

  • Post author:Patient Worthy Contributor
  • Post published:July 20, 2018
  • Post category:Rare Disease

Happy Friday, everyone! We hope the weekend is bringing everyone some time to relax. Today, we're wrapping up the week with four stories we wanted to highlight this week. We…

Continue Reading Editor’s Choice: Combating Isolation and Finding Purpose with Rare Disease
Multiple Sclerosis Can Often be Preceded by Earlier Symptoms, Study Says
geralt / Pixabay

Multiple Sclerosis Can Often be Preceded by Earlier Symptoms, Study Says

  • Post author:James Moore
  • Post published:July 20, 2018
  • Post category:Multiple Sclerosis

According to a story from UBC, a recent study has revealed that multiple sclerosis patients may start experiencing abnormal symptoms up to five years before they begin to manifest the…

Continue Reading Multiple Sclerosis Can Often be Preceded by Earlier Symptoms, Study Says
New Device Can Successfully Treat Potentially Fatal Aortic Aneurysms
skeeze / Pixabay

New Device Can Successfully Treat Potentially Fatal Aortic Aneurysms

  • Post author:James Moore
  • Post published:July 20, 2018
  • Post category:Ehlers-Danlos Syndrome/Marfan Syndrome

According to a story from the Tampa Bay Times, Dr. Murray Shames, who works at the Tampa General Hospital, has been finding success using a new device to treatment dangerous…

Continue Reading New Device Can Successfully Treat Potentially Fatal Aortic Aneurysms
Former TV Actor Colin Wells Talks About How Mitochondrial Disease Affects His Family
Free-Photos / Pixabay

Former TV Actor Colin Wells Talks About How Mitochondrial Disease Affects His Family

  • Post author:Anna Hewitt
  • Post published:July 20, 2018
  • Post category:Mitochondrial Disease

Colin Wells, an actor who has previously played roles in the TV shows Hollyoaks and Casualty, has a son and daughter who are both diagnosed with mitochondrial disease. The source…

Continue Reading Former TV Actor Colin Wells Talks About How Mitochondrial Disease Affects His Family
Gastroschisis Awareness Day: What You Need to Know and How to Help!
PixLoger / Pixabay

Gastroschisis Awareness Day: What You Need to Know and How to Help!

  • Post author:Jean Martell
  • Post published:July 20, 2018
  • Post category:Gastroschisis/Rare Disease

July 30th is Gastroschisis Awareness Day! Gastroschisis is a rare birth defect of the abdominal wall.  With this condition, the baby’s intestines stick outside of the body through a hole in…

Continue Reading Gastroschisis Awareness Day: What You Need to Know and How to Help!
Adapting to Adversity
Source: Pixabay.com

Adapting to Adversity

  • Post author:Tom Seaman
  • Post published:July 20, 2018
  • Post category:Cervical Dystonia/Dystonia

How someone deals with adversity is very unique to the situation and the individual. I have faced great adversity at different times in my life, some of which I handled…

Continue Reading Adapting to Adversity
Clinical Trial For Experimental Chronic Fatigue Syndrome Treatment is Set to Begin
marusya21111999 / Pixabay

Clinical Trial For Experimental Chronic Fatigue Syndrome Treatment is Set to Begin

  • Post author:James Moore
  • Post published:July 20, 2018
  • Post category:Chronic Fatigue Syndrome

According to a story from healthrising.org, the pharmaceutical company Cortene has been in the process of developing a treatment for chronic fatigue syndrome, and a clinical trial to test the…

Continue Reading Clinical Trial For Experimental Chronic Fatigue Syndrome Treatment is Set to Begin
Family Shares Groundbreaking Spinal Muscular Atrophy Experience
rawpixel / Pixabay

Family Shares Groundbreaking Spinal Muscular Atrophy Experience

  • Post author:Samuel Sachs
  • Post published:July 20, 2018
  • Post category:Spinal Muscular Atrophy

Asher Camp is five years old. His parents, Amanda and Jeremy, had two daughters before Asher. That’s why when Asher progressed differently, they knew to be concerned. After quick action,…

Continue Reading Family Shares Groundbreaking Spinal Muscular Atrophy Experience
Treatment for Progressive Supranuclear Palsy Gets Orphan Drug Designation
source: pixabay.com

Treatment for Progressive Supranuclear Palsy Gets Orphan Drug Designation

  • Post author:James Moore
  • Post published:July 20, 2018
  • Post category:Progressive Supranuclear Palsy

According to a story from kait8.com, the drug development company Asceneuron SA recently announced that its experimental molecule ASN120290 was recently granted Orphan Drug Designation by the FDA. ASN120290 is…

Continue Reading Treatment for Progressive Supranuclear Palsy Gets Orphan Drug Designation

Featured


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Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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