Burden in Late Onset Pompe Disease (LOPD)

We will soon be commencing a study of the burden that patients and families experience related to Late Onset Pompe Disease (LOPD).  The study will be open to patients who have been diagnosed with Late Onset Pompe Disease (LOPD) or their parent/legal guardian and is anticipated to begin Q2, 2024.  Participants will be involved in a one-hour telephone interview and will receive an honorarium for participation.  Please check back for details or visit Sign Up for Future Research if you would like us to contact you for consideration.