Bob Stevens Received the 2026 Patient Advocate Leader (PAL) Award Bob Stevens is a globally respected leader in the lysosomal disease community, currently serving as Group CEO of the MPS Society and Rare Disease Research Partners (RDRP). For more than 25 years, he has dedicated his life to supporting individuals and families affected by lysosomal […]
The WORLDSymposium 2025 Awards Committee selected Maria, Dean and Teryn as the recipients of the 2025 PAL Award. More details.
WORLDSymposium 2024 Patient Advocate Leader (PAL) Award was received by lan Finglas on Tuesday, February 6, 2024. Alan and his wife Michelle founded MSD Action Foundation & SavingDylan.com More details.
WORLDSymposium 2023 Patient Advocate Leader (PAL) Award was received by Christine Waggoner on Thursday, February 23, 2023. Christine founded the Cure GM1 Foundation in April 2015 in honor of her daughter Iris and all those affected by GM1 gangliosidosis. More details.
WORLDSymposium 2022 Patient Advocate Leader (PAL) Award was received by Sue Kahn on Tuesday, February 8, 2022. For 14 years, Sue has served as the Executive Director of the National Tay-Sachs & Allied Diseases Association (NTSAD) that supports families affected by Tay-Sachs, Canavan, GM1, and Sandhoff. More details.
WORLDSymposium 2021 Patient Advocate Leader (PAL) Award was received by Terri L. Klein on Tuesday, February 9, 2021. For 14 years, Sue has served as the ETerri Klein, NPGC is the President and CEO at the National MPS Society, USA. More details.
WORLDSymposium 2020 Patient Advocate Leader (PAL) Award was received by Cara O’Neill, MD on Wednesday, February 12, 2020. Cara O’Neill, MD, is the Chief Science Officer at Cure Sanfilippo Foundation, a pediatrician, and mother to a daughter with the rare disease Sanfilippo syndrome (MPS III). More details.
WORLDSymposium 2022 Patient Advocate Leader (PAL) Award was received by Mark Dant on Wednesday, February 6, 2019. Mark Dant is the Chairman of the Board of the Washington DC-based EveryLife Foundation for Rare Diseases, a science-based advocacy organization dedicated to accelerating biotech innovations for rare disease treatments through science-driven public policy. More details.
WORLDSymposium 2018 Patient Advocate Leader (PAL) Award was received by Jack Johnson on Wednesday, February 7, 2018. Jack is a founding member and Executive Director of the Fabry Support & Information Group (FSIG) in the United States, and is also a founding member and Vice President and Board Member of the Fabry International Network (FIN). More details.
WORLDSymposium 2017 Patient Advocate Leader (PAL) Award was received by Christine Lavery, MBE on Thursday, February 16, 2017. Christine Lavery founded the United Kingdom (UK) Society for Mucopolysaccharide Diseases (MPS Society) in 1982 following the death of her firstborn son, Simon, from Hunter disease. More details.
WORLDSymposium 2016 Patient Advocate Leader (PAL) Award was received by Barbara Wedehase. Barbara Wedehase has a Masters in Social Work from Washington University in St. Louis, Missouri and is a Board Certified Genetic Counselor.More details.