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


Lysosomal Disease Network annual meeting 2022 (5/10/2022) - The Lysosomal Disease Network’s annual “all consortium” meeting has been scheduled for June 24th, 2022, Noon - 4 PM EST. Please watch this space for future details. Specific topics you would like to see on the Agenda can be sent to David Erickson at Continue Reading

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