About the WORLDSymposium Patient Advocate Leader (PAL) Award

Each year, WORLDSymposium recognizes individuals for patient advocacy leadership in the field of lysosomal disease.

An announcement of the award recipient is included in the February lysosomes issue of Molecular Genetics and Metabolism. (This award is given on a yearly basis, but can be omitted in any given year at the discretion of the Planning Committee.) Nominations are solicited annually from members of the lysosomal disease community, planning committee members and attendees of WORLDSymposium.

The 2027 Patient Advocate Leader Award will be presented at 08:00 PST on Tuesday, February 2, 2027, at the 23rd Annual WORLDSymposium in San Diego, CA.

Past Award Recipients:

2026 Bob Stevens, MPS Society and Rare Disease Research Partners (RDRP) 2025 Maria Kefalas, Calliope Joy Foundation, and Cure MLD Foundation
2025 Dean and Teryn Suhr, MLD Foundation
2024 Alan Finglas, MSD Action Foundation & SavingDylan.com
2023 Christine Waggoner, Cure GM1 Foundation
2022 Sue Kahn, National Tay-Sachs & Allied Diseases Association (NTSAD)
2021 Terri L. Klein, NPGC, National MPS Society, USA
2020 Cara O’Neill, MD, Cure Sanfilippo Foundation
2019 Mark Dant, EveryLife Foundation for Rare Diseases, National MPS Society
2018 Jack Johnson, Fabry Support & Information Group
2017 Christine Lavery, UK Society for Mucopolysaccharide Diseases
2016 Barbara Wedehase, National MPS Society