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Pompe

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‘Together We Are Strong’ – Catching Up After International Pompe Disease Day

‘Together We Are Strong’ – Catching Up After International Pompe Disease Day

  • Post author:Jean Martell
  • Post published:April 17, 2019
  • Post category:Pompe Disease

April 15th is International Pompe Disease Day! The International Pompe Association (IPA) is an organization of Pompe disease patient groups that seeks to coordinate activities and share experiences worldwide.  The…

Continue Reading ‘Together We Are Strong’ – Catching Up After International Pompe Disease Day
Better Options for Those in India with Pompe and Gaucher Disease
Free-Photos / Pixabay

Better Options for Those in India with Pompe and Gaucher Disease

  • Post author:Athena Lee
  • Post published:July 18, 2018
  • Post category:Gaucher Disease/Pompe Disease

According to The Hindu, the Institute of Child Health (ICH) in Egmore, India is soon going to be able to offer more medical options to children with lysosomal storage disorders…

Continue Reading Better Options for Those in India with Pompe and Gaucher Disease
It’s International Pompe Day!
Source: Pixabay

It’s International Pompe Day!

  • Post author:Rebekah
  • Post published:April 15, 2018
  • Post category:Pompe Disease/Rare Disease

It is international Pompe Day! “Together we are Strong” Today is meant to help create awareness for the Lysosomal Storage Disorder Pompe Disease, which is both rare and underdiagnosed. Pompe…

Continue Reading It’s International Pompe Day!
Advocate for Newborn Screening in VA!
Source: Pixabay

Advocate for Newborn Screening in VA!

  • Post author:Rebekah
  • Post published:November 29, 2017
  • Post category:MPS I (Hurler Syndrome)/Pompe Disease/Rare Disease

The fate of newborn screening for Pompe disease and MPS-1 throughout the state of VA will be determined next week. The VA Newborn Screening Advisory Committee meeting will take place…

Continue Reading Advocate for Newborn Screening in VA!
Why a Lifetime of ERT May Be a Thing of the Past
Source: www.pixabay.com

Why a Lifetime of ERT May Be a Thing of the Past

  • Post author:James Ernest Cassady
  • Post published:November 8, 2016
  • Post category:Gaucher Disease/Pompe Disease/Rare Disease

In 1964, Henri Hers was studying Pompe disease when he suggested that the absence of lysosomal enzymes could be responsible for several other conditions. He was right, and a category of…

Continue Reading Why a Lifetime of ERT May Be a Thing of the Past
Do You Ever Wonder What’s Happening Down Under?
Source: www.pixabay.com

Do You Ever Wonder What’s Happening Down Under?

  • Post author:Erica Zahn
  • Post published:August 22, 2016
  • Post category:Pompe Disease/Rare Disease

Pompe disease is one of those rare disorders that progresses steadily over the course of a person's life. Patients are lacking the enzyme that breaks down glycogen, and the build-up of…

Continue Reading Do You Ever Wonder What’s Happening Down Under?
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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