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How to Manage LOPD Patients Diagnosed Through NBS

How to Manage LOPD Patients Diagnosed Through NBS

Aug 10, 2023 | PAST WEBINARS

Webinar Details Title: New insights into Pompe disease since the advent of NBS Date: Thursday, August 10, 2023 Time: 1 PM CT / 2 PM ET Speakers:Dr. Priya Kishnani, MDErin Huggins, MS, CGC Webinar Overview:An overview of the lessons learned from newborn screening for...

CALL to participate in IPA Project Every Move Counts

Aug 3, 2023 | NEWS, ARCHIVES

At International Pompe Day the International Pompe Association kicked off the Every Move Counts project. This project focuses on raising awareness of the importance of movement. We all have different abilities and levels of disability, but the important thing to...

Rare Artist Contest is now Open for Submissions

Aug 2, 2023 | NEWS, ARCHIVES

Enter July 23rd – August 31st at RareArtist.org The Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals impacted by rare disease to tell their story through art. Now in year 13, the Rare Artist Annual Contest is focused on...