Jenna is mom to two boys who are living with late-onset Pompe disease (LOPD). Being a caregiver for someone with a rare disease means always thinking about someone else and often putting their needs before yours. #PompeDisease #AmicusCares

Today, we honor #InternationalPompeDay alongside those within the #PompeDisease community. Please join us as we celebrate this group of resilient and dedicated individuals. #TogetherWeAreStrong

Youth volunteers, like Kieran, give their time to make positive change in the neuromuscular community. He shared his story and lived experience to make our social media posts more relatable and brought a fresh perspective that improved our website and newsletter content. #NVW2024

#PompeDisease affects muscle strength, such as walking, standing, and even the ability to breathe. This #Pies4Pompe Challenge goes out to Ryan Colburn #RareDisease #Pompe

#PompeDisease is a genetic disorder inherited from both parents. Take the #Pies4Pompe Challenge! #RareDisease #Pompe

Exciting news! We're supporting the #Pies4Pompe Challenge to raise awareness of Pompe disease, a rare genetic condition. Join us—take a pie, challenge friends, and spread the word! CdnAssocOfPompe Join the movement here: hubs.ly/Q02tmV_d0 #Pies4Pompe

We are proud to announce that we have completed an exclusive worldwide license agreement with SHIONOGI for the rights to MZE001, an investigational oral glycogen synthase 1 (GYS1) inhibitor that aims to address #Pompedisease. Read more here: shionogi.com/us/en/news/202…

Eurordis estime que plus de 300 millions de personnes dans le monde sont touchées par des maladies rares. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

Eurordis estimates that there are over 300 million people in the world who are affected by rare diseases. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

La maladie de Pompe peut être confondue avec d'autres maladies, ce qui retarde le traitement. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

Pompe disease can be mistaken for other conditions, delaying treatment. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

La maladie de Pompe affaiblit les muscles, notamment ceux nécessaires à la respiration. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

Grâce aux progrès de la génétique et au moindre coût des tests génétiques, le délai de diagnostic peut être réduit pour de nombreuses maladies rares. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

With advancements in genetics and the lower cost of genetic testing, diagnostic delay can be reduced for many rare diseases. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

Pompe disease is treated with enzyme replacement therapy. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

La maladie de Pompe est traitée par une thérapie de substitution enzymatique. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

Pompe disease affects every part of life, but support makes a difference. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

La maladie de Pompe affecte tous les aspects de la vie, mais le soutien fait la différence. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

Rare Disease Day highlights thousands of rare conditions, shared by hundreds of millions of people, and the support they get from countless good people from around the world. #Pompe #RareDiseaseDay #PompeDisease #RareDisease

La Journée des maladies rares met en lumière des milliers de maladies rares, partagées par des centaines de millions de personnes, et le soutien qu'elles reçoivent d'innombrables personnes du monde entier. #Pompe #RareDiseaseDay #PompeDisease #RareDisease