International #Pompe Day is April 15. You are your best advocate! These words of wisdom have been shared by the Pompe community and brought to life by inspired artists. Share your own experiences and wisdom by using the tag #PompePearls. #PompeDay #RareDisease #PompeDisease

Tomorrow is International Pompe Day. Are you or someone you know struggling with the out-of-pocket costs associated with #PompeDisease? TAF may be able to help: ow.ly/GIUN50NckG9.

International #Pompe Day is April 15 CdnAssocOfPompe Opinion: Newborn screening for Pompe would significantly lessen the disease’s impact on Canadian families | Patient Voice patientvoice.io/stories/opinio…

2023-04-15 is #InternationalPompeDay #PompeDay #WordCloud

April 15th is International Pompe Day. Meet Kylie, painted by artist Sara Breslin. "Along with her siblings, she’s the brightest light in our lives and we are beyond blessed to get to call her ours!" #Pompe #RareDiseases #RareAllYear

Diagnosing Pompe disease can be very challenging and take some time. Diagnosis typically involves a physical exam, blood tests, and genetic testing. #PompeDisease #RareDisease #GeneticTesting #PompeDay

Enzyme replacement therapy (ERT) is a treatment that replaces the missing or deficient GAA enzyme, helping to break down glycogen and prevent muscle damage. #PompeDisease #RareDisease #PompeDay

#Pompe disease is an inherited condition, passed down from both parents. A genetic counselor helps families understand the risks. #PompeDisease #GeneticCounseling #PompeDay

#Pompe disease is managed by a care team covering many specialties, but the most important person on that team is you. You are an expert too! #PompeDisease #RareDisease #PompeDay

Pompe Day wrap-up! Many thx to Sanofi & everyone who participated in Pompe Pearls. Remember that being rare isn’t just one day a year for #Pompe families. Share your experiences and wisdom anytime with these hashtags. #PompePearls #PompeDay #RareDisease youtu.be/PKMDivXHD-Q

My daughter with no treatment options joined a #drugtrial 3 years ago. #FDA has changed its requirement many times in the last few years for rare disease making it harder to approval #OrphanDrugs like AT-007. We just found out she was on placebo for 18 months. We now get to

200 people with 200 unique stories. Zeal Access can make sure those stories get told and shared.

Cancer ghosting, let’s talk about it 👻 I took these two pictures after my first hospital admission then scrolled through my feed and cried. At 29, I found myself using a bedpan while I watched friends skiing down mountainsides. It was the first time I’d recognize how detached

💗DÍA MUNDIAL DE LA ENFERMEDAD DE POMPE Hoy, 15 de abril, celebramos esta fecha saliendo a la calle, contando nuestra realidad, reivindicando investigación, atención multidisciplinar y visibilidad social. ▶️Hoy, más que nunca, contamos contigo. ¿Te sumas a nuestro día especial?

The chance of being a carrier of #PompeDisease is greater than 1/100. This #Pies4Pompe Challenge goes out to James Radke james radke

Take the #Pies4Pompe Challenge and then challenge your friends! More info at pies4pompe.com #PompeDay #RareDisease #PompeDisease

#PompeDisease can affect anyone of any age. This #Pies4Pompe Challenge goes out to Allyson Lock #RareDisease #Pompe

#PompeDisease is underdiagnosed but, with newborn screening in the US and other countries, this will change. This #Pies4Pompe Challenge goes out to SmashingPompe #RareDisease #Pompe

#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