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Daily Archives: October 19, 2017

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Grieving Mother Pays Tribute to Rare Disease Son
Source: Pixabay

Grieving Mother Pays Tribute to Rare Disease Son

  • Post author:Andres Rovira
  • Post published:October 19, 2017
  • Post category:Sturge-Weber Syndrome

After the long hard fight against Sturge-Weber syndrome, 23-year-old Craig Morrison could fight no longer. He passed last Monday following complications with his rare disease. Sturge-Weber syndrome springs at birth…

Continue Reading Grieving Mother Pays Tribute to Rare Disease Son
Drug Companies Get Sneaky with Patent Law
Source: Pixabay

Drug Companies Get Sneaky with Patent Law

  • Post author:Andres Rovira
  • Post published:October 19, 2017
  • Post category:Rare Disease

Prescription drugs have always been overly expensive but there's now hope for these prices to drop down. On Tuesday morning, the Senate Health Committee held a hearing to discuss the…

Continue Reading Drug Companies Get Sneaky with Patent Law
You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease
Source: Pixabay

You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease

  • Post author:Andres Rovira
  • Post published:October 19, 2017
  • Post category:Addison's Disease

A young girl from Australia had her period when she was 4-years-old. According to Independent, young Emily Dover is well on her way to experiencing menopause at the young age…

Continue Reading You Can Help a 5-Year-Old Girl Facing Menopause Due to Addison’s Disease
High-School Science Project Identifies Mutant Choroideremia Gene
stevepb / Pixabay

High-School Science Project Identifies Mutant Choroideremia Gene

  • Post author:Chloe Easterbrook
  • Post published:October 19, 2017
  • Post category:Choroideremia/Rare Disease

Exploding paper-mache volcanoes. Solar systems made of styrofoam balls. Carrot electricity. I remember the sights, smells, and sounds of my high school science fair as it was yesterday. Those earth-shattering…

Continue Reading High-School Science Project Identifies Mutant Choroideremia Gene
Make Way for MDS World Awareness Day 2017 Next Week!
Source: Pixabay

Make Way for MDS World Awareness Day 2017 Next Week!

  • Post author:Minden Cantrell
  • Post published:October 19, 2017
  • Post category:Myelodysplastic syndromes/Rare Disease

Last year in London, a flash mob took the streets and pounded out a choreographed routine to the song "I Am What I Am". They weren't just having a blast…

Continue Reading Make Way for MDS World Awareness Day 2017 Next Week!
Copper Moves Inside the Body to Fight ALS
Source: Pixabay

Copper Moves Inside the Body to Fight ALS

  • Post author:Al Pendleton
  • Post published:October 19, 2017
  • Post category:Amyotrophic Lateral Sclerosis

It seems like copper is all the rage right now. A quick stop by any pharmacy shows copper-infused knee, ankle, wrist, and even back braces. Even the ironman of the…

Continue Reading Copper Moves Inside the Body to Fight ALS
When Every Day is a Fight to Breathe

When Every Day is a Fight to Breathe

  • Post author:Patient Worthy Contributor
  • Post published:October 19, 2017
  • Post category:Cystic Fibrosis/Rare Disease

Date of issue: October 19, 2017 Boxing legend Michael Carruth was today firmly in Cystic Fibrosis Ireland's corner at Dublin's Irish Film Institute for the launch of a new awareness…

Continue Reading When Every Day is a Fight to Breathe
Actress With Stiff Person Syndrome Tells Her Story

Actress With Stiff Person Syndrome Tells Her Story

  • Post author:Patient Worthy Contributor
  • Post published:October 19, 2017
  • Post category:Rare Disease/Stiff-Person Syndrome

Sherry Jo Ward sits in an orange armchair, playing harmonica in the center of the stage. She leans forward on the matching ottoman for emphasis. Her walker is never out…

Continue Reading Actress With Stiff Person Syndrome Tells Her Story

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