Welcome to the International Pompe Association (IPA)
Further information regarding the RESOLUTE gene therapy study for Pompe disease can also be found, in addition to the clinicaltrials.gov posting, on this website: https://forpatients.roche.com/en/trials/metabolic-disorder/lysosomal-storage-diseases/a-gene-transfer-study-for-late-onset-pompe-disease--res-94300.html
Disclaimer: The IPA does not endorse any of the products, medications, treatments or information reported herein. Articles on the IPA web pages are intended for informational purposes, only. We strongly advise that you discuss all medications, treatments, and/or products with your physician.
April 15, 2020
Today is our 7th 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 believes that raising awareness about Pompe Disease is key, and the theme selected for 2020 is Hope For The Future: It is an exciting time for the Pompe Community worldwide with new studies and treatments on the horizon, and Hope is what drives the patient community, and what inspires the medical\scientific community, and industry, to keep working.
And while the current Covid-19 pandemic is unprecedented, and we are trying to take each day as it comes due to the uncertainty, now, more than ever, we need to have hope and spread hope, we will get through together as a united community and something positive will come out of it.
Our Hopes For the Future have been collected in a dedicated blog that the IPA has specifically created: ipompeday.blogspot.com/2020
Thanks to all that have contributed, and happy International Pompe Day to our amazing Pompe community, to the Pompe warriors, families, carers, medical specialists and all those collecting our hopes and contributing to a better future!
Courtesy of the AMDA - Acid Maltase Deficiency Association.
With all of the questions and uncertainty surrounding the ongoing COVID-19 pandemic, the AMDA worked with Dr. Priya Kishnani and her group at Duke University on the following Question and Answer Fact Sheet. We hope that the Pompe Community will find the information included helpful.
Please note that this was based on information available as of 3/19/20. This is a constantly evolving situation. As more information becomes available, we will strive to promptly update this information as necessary.
To read the AMDA Question & Answer Fact Sheet, please click here.
Disclaimer: the current situation regarding the COVID-19 health emergency varies country by country and therefore some of the information may not be relevant to your country-specific situation. In the event of questions and/or uncertainties, the IPA encourages to reach out to national patient organizations and treating physicians.