In an effort to raise public awareness and increase understanding of Pompe disease, the 8th Annual International Pompe Day will be celebrated on April 15.
This year’s theme is “Pompe Around the World,” the International Pompe Association (IPA) announced. The event’s slogan is “Together We Are Strong.”
“The IPA encourages everyone to become involved to show how STRONG our Community is – both in numbers and in passion!” the organization states on its website.
Pompe disease, also known as acid maltase deficiency, is a rare genetic disorder affecting about one in 40,000 births in the U.S. It impairs the working of different organs and tissues, especially the heart, respiratory, and skeletal muscles.
As with other rare conditions, the early and accurate diagnosis of Pompe is still not standard, despite progress with genetic testing and enzyme activity tests. Complicating its diagnosis, several symptoms of Pompe disease — such as poor muscle tone and chest infections — are seen in other disorders, requiring differential diagnosis by a multidisciplinary team.
Raising awareness is key to increasing understanding of the disease, not only by the general public but also by clinicians, the event coordinators said. Greater understanding also may help boost research support.
The initiative hopes to bring together the international community of people with Pompe in showing what it is like to live with the disease. “No matter where we live we are all connected,” the International Pompe Association states.
To participate, patients and others in the Pompe community can take a picture representing where they live and send it by email — together with a short description of their lives — to [email protected]. All submissions should include the person’s name, age and country of residence. More instructions about the email can be found here.
The posts will be published on the 2021 International Pompe Day blog, which will be live on April 15. In the meantime, a list of all the people who emailed their photo and statement will be shown and updated frequently so that everyone can check to see if their submission was successfully received.
The International Pompe Day is also open to organizations that want to show their support. Those interested can send their logo (or name) by email to [email protected] for publication.
Supporters also are encouraged to partake in acquiring official items with the “Together We Are Strong” logo, including t-shirts, sweatshirts, mugs, stickers, tote bags, and more. The shop — available here — is hosted by the Acid Maltase Deficiency Association and proceeds will go towards Pompe disease awareness.
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