About the WORLDSymposium Patient Advocate Leader (PAL) Award

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

Award Nominations Deadline: September 3, 2024.

Click here to submit an Award Nomination.

An announcement of the award recipient is included in the February special 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 2025 Patient Advocate Leader Award will be presented at 08:00 PST on Wednesday, February 5, 2025, at the 21st annual WORLDSymposium in San Diego, California.

Past Award Recipients:

2016 Barbara Wedehase, National MPS Society
2017 Christine Lavery, UK Society for Mucopolysaccharide Diseases
2018 Jack Johnson, Fabry Support & Information Group
2019 Mark Dant, EveryLife Foundation for Rare Diseases, National MPS Society
2020 Cara O’Neill, MD, Cure Sanfilippo Foundation
2021 Terri L. Klein, NPGC, National MPS Society, USA
2022 Sue Kahn, National Tay-Sachs & Allied Diseases Association (NTSAD)
2023 Christine Waggoner, Cure GM1 Foundation
2024 Alan Finglas, MSD Action Foundation & SavingDylan.com