Passing of Patient/Advocate Erica Thiel (2/7/2022) - Our beloved friend Erica Thiel passed away recently on Saturday, January 8.  Erica was born on March 5, 1983, and was diagnosed with MPS I (Scheie Syndrome) in 2004 at the age of 21. She was such an inspiration and extremely helpful to many in the MPS community, through her tireless volunteer work in both… Continue Reading


POMPE PATIENT MEETING, August 2022 (6/22/2022) - Happy summer to all! We first want to thank everyone for their patience and understanding as our team finalizes details for the upcoming 2022 Pediatric Pompe Patient Meeting to be held in person August 5-6, 2022. Please read this in its entirety for important information about the meeting. If you still would like to register for the… Continue Reading

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