International Pompe Association

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The IPA is excited to announce that the international Pompe community has chosen April 15 as the annual International Pompe Day! The goal of International Pompe Day is to foster international awareness of Pompe Disease and the slogan for our day 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! There are several ways that you can participate:

  • Visit our International Pompe Day blog: https://ipompeday.blogspot.com/
  • Participate in the International Pompe Day Activities!
  • Become a Supporter! Organizations are invited and encouraged to become Supporters of International Pompe Day by submitting their logo (or name) for publication on the International Pompe Day website. Please email your logo to InternationalPompeDay@worldpompe.org
  • Buy Your Official International Pompe Day Merchandise! Merchandise is available at the International Pompe Day Shop on Cafe Press. The Shop is hosted by the Acid Maltase Deficiency Association and proceeds will go towards Pompe Disease Awareness.

International Pompe Day

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April 15, 2021 will be our 8th Annual International Pompe Day!

The IPA believes that raising awareness of Pompe Disease is key, and this year’s theme has been selected as “Pompe Around the World.”

How You can Participate:

  1. Our goal with Pompe Around the World is to show what it is like to live, cope, or how you are connected with Pompe all over the world — that no matter where we live we are all connected. Please take a picture that represents where you live and share a short statement about your life.
  2. Send an email to ipd2021@worldpompe.org
  • the subject of your email will be the title of your post;
  • the body of the email will be the post itself, where you can share your short statement;
  • to include your photo in your post, you can simply attach the image to your email (total size max. 10 MB).
  • Please include your name, country and age in the email, so we can show the world how strong our Community is.

By submitting a contribution, you agree that it is published on our 2021 International Pompe Day blog: ipompeday.blogspot.com

The Blog will go live on International Pompe Day—April 15, 2021. However, we will post a list of submissions, which will be periodically updated, so that you can see if your submission has been received.

Thank you!

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The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fifth Annual International Pompe Day!

The IPA is very excited to announce the winners in each category:

Age 0-7

First Place: Abdurrahman Amerat


The sun gives us light, energy and it grows food to make everyone strong. It also makes the universe powerful.

Read more: 2018 Talent of Pompe (ToP) Awards: Results

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The IPA would like to thank everyone who participated in the Talent of Pompe (ToP) Awards Contest on the occasion of the Fourth Annual International Pompe Day!

The IPA is very excited to announce the winners in each category:

Age 0-5

First Place: Abdurrahman Amerat


Many people find it hard to breathe and if we save our trees we can then make it easier for people to breathe everywhere in the world!

Read more: 2017 Talent of Pompe (ToP) Awards: Results

Tips and Tricks from the Pompe Community

April 15, 2017 is the Fourth Annual International Pompe Day. The International Pompe Association (IPA), with the support of the global Pompe community, launched International Pompe Day in 2014. The goal of International Pompe Day is to raise global awareness of Pompe disease, a rare neuromuscular condition that affects approximately 1 in 40,000 people around the world.

When International Pompe Day was launched, the Pompe Community selected “Together We Are Strong” as its motto. We believe that as a united community of patients, family members, friends, scientists, doctors, and industry partners we have accomplished, and can continue to accomplish, great things. Together we have seen a treatment for Pompe become a reality for most people around the world, and working together we see new and better treatments on the horizon in the near future.

This year, as a global community we turn our attention and advocacy power to the importance of “Living Healthy with Pompe Disease”. Pompe disease is just one part of the Pompe individual’s life. To have a healthy lifestyle, those without Pompe have to eat healthy, sleep well, and stay active. The same is true for those with Pompe. And it can be a struggle to find the right balance, and the right approach to achieve a healthy lifestyle for all of us.

For this year’s International Pompe Day, the IPA would like to raise awareness of the benefits of “Living Healthy with Pompe” for everyone diagnosed with Pompe disesae. We understand the challenges that people can face because of the effects of Pompe, and want to provide support and encouragement to everyone. When trying to incorporate new habits and lifestyle goals it can be overwhelming at the beginning. You don’t know where to start, and it is easy to get discouraged. The ways to “Live Healthy” are as diverse as the Pompe Community, and it is our goal on International Pompe Day to support our Community as they strive to define what “Living Healthy with Pompe” means for each of them.

Read more: Living Healthy with Pompe

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The IPA would like to thank everyone who participated in the Third Annual International Pompe Day Art Contest! The participation level this year was the highest yet!

All of the judges expressed how much they enjoyed seeing everyone’s unique interpretation of “Together We Are Strong.”

The IPA is very excited to announce the winners in each category:

Age 6-10

Chloe Mah (First place)


Finger painting by Chloe using many colors with each representing different stakeholders coming together to support people with Pompe disease.

Abdullah Hashim Amerat (Second place)


When we are together we can take off and do super things!

Jesse Walker (Third place)


My piece shows together we are strong because of the way the letters are drawn together to support each other to show Together We Are Strong. Even when one of us falls out of place, we still pick them up and help them fit in and stay strong.

Read more: 2016 International Pompe Day Art Contest: Results

"Translational aspects are key elements of the rare disease field, and Pompe disease plays a major role model for the entire rare disease community. Linking international resources, researchers, clinicians, public money and industry together will provide superior treatment to all of our patients with harmonized standards of care around the world. I strongly support any networking that includes the national and international Pompe patient organizations. As we made great steps forward during the past decade, let´s celebrate the first annual International Pompe Day on April 15, 2014!"

Professor Benedikt Schoser
Friedrich-Baur Institute, Department of Neurology, Munich, Germany


"For the past twenty five years, I have studied the biochemistry, molecular genetics, and cell biology of Pompe disease. My work days are similar to those of most scientists - long hours, intellectual and experimental challenges that are both addictive and frustrating, tedious manuscript preparation, and worries concerning research funding. So what, you might ask, keeps me coming back to my laboratory each day? Hackneyed as it may sound, I have to disclose that it is the infusion of incentive to find better treatments for Pompe disease that I experience following my attendance at meetings that include patient presentations. No scientific talk or high of discovery so deeply inspires and motivates."

Dr. Nina Raben
Staff Scientist, Laboratory of Muscle Stem Cells and Gene Regulation, NIAMS, National Institutes of Health, Bethesda, MD, 20892, USA


"Duke has a long and dedicated history to Pompe research. To make great strides in the field and improve the lives of our patients, we need to build awareness and create partnerships among the researchers, patient organizations and industry. We are very excited to support and be a part of the first annual international Pompe day as we celebrate Together We Are Strong!"

Priya S. Kishnani, MD, MB BS
Duke University Medical Center, Durham, NC 27710, USA


"Together we are strong! - A better slogan for the first International Pompe Day could not have been chosen. Activities around Pompe disease either driven by patients, clinicians, scientists or industrial parties have always been focused on a common goal: understanding and combatting the disease in order to improve the life of patients. Patients are pressing doctors to diagnose and cure their disease, doctors put the pressure on scientists to come with brilliant solutions, and finally the pressure is laid on industrial parties to proof they can realize the 'unmet needs'. The magic with Pompe disease is that each party stands for its own case, collaborates but also quarrels with other parties, but at the end all parties adhere to the same common goal and achieve that goal. Together we are strong!- a very true message, worthwhile to be spread at this first International Pompe Day.

Arnold JJ Reuser
Department of Clinical Genetics, Center for Lysosomal and Metabolic Diseases, Erasmus MC University Medical Center, Rotterdam, The Netherlands


 

IPD Supporters

International Pompe Association (IPA)
International Pompe Association

 

Acid Maltase Deficiency Association (USA)
Acid Maltase Deficiency Association

 

Amicus Therapeutics
Amicus Therapeutics

 

The Association for Glycogen Storage Disease UK
The Association for Glycogen Storage Disease UK

 

Association Shifa des Maladies NeuroMusculaires (Algeria)
Association Shifa des Maladies NeuroMusculaires

 

Australian Pompe's Association
Australian Pompe's Association

 

Canadian Association of Pompe - Association Canadienne de Pompe
Canadian Association of Pompe
Association Canadienne de Pompe

 

baebies
baebies

 

Genzyme Corporation, a Sanofi company (USA)
Genzyme Corporation, a Sanofi company

 

Gripjoy (USA)
Gripjoy

 

Hope Travels
Hope Travels

 

Hrvatski savez za rijetke bolesti (Croatia)
Hrvatski savez za rijetke bolesti

 

Проект Ай-Мио (I-MIO Project)
Проект Ай-Мио (I-MIO Project)

 

Lysosomal Diseases New Zealand
Lysosomal Diseases New Zealand

 

National Organization for Rare Disorders (NORD)
National Organization for Rare Disorders (NORD)

 

New Zealand Pompe Network
New Zealand Pompe Network

 

Pompe Alliance
Pompe Alliance

 

Pompe Deutschland e.V.
Pompe Deutschland e.V.

 

Rare Diseases South Africa
Rare Diseases South Africa

 

Selbsthilfegruppe Glykogenose Deutschland (Germany)
Selbsthilfegruppe Glykogenose Deutschland

 

Vereniging Spierziekten Nederland (The Netherlands)
Vereniging Spierziekten Nederland