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 IPA organizes events to honor Pompe Disease Day to bring the entire global Pompe patient community together.
What is Pompe Disease?
Pompe disease, which affects approximately 1 in 40,000 Americans, is a genetic disorder that occurs as a result of certain mutations found in the GAA gene. Pompe disease causes high levels of glycogen, a complex sugar found at the cellular level, to accumulate. Because the body is unable to process the buildup of glycogen in people with Pompe disease, it impairs the functioning of various muscles, tissues, and organs.
Pompe disease is a life-threatening condition, and there are different types that present during infancy on into adulthood.
‘Moving on with Pompe’
This year’s theme is “Moving On with Pompe” — which is meant to be an encouraging and positive theme to show how the Pompe community can life a fulfilling life despite the challenges of living with a rare disease.
How Support Pompe Communities:
You can share your photos and personal story of how you are ‘moving On with Pompe’ by sending an email to [email protected] and:
- In the subject of the email, include the title of your post
- In the body of the email, write your post
- Make sure to include a photo in your post
- Lastly, please include your name, country, and age in the email, so the IPA can show the world how strong and far reaching the Pompe Community is!
Together, the voices of the Pompe Community will be heard!
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