Bob Stevens, Group Chief Executive of the MPS Society and Rare Disease Research Partners (RDRP), has been named Patient Advocate Leader (PAL) of the Year by the WORLDSymposium 2026 Awards Committee.
He will be presented with the award on Wednesday, 4 February 2026, at the 22nd annual WORLDSymposium in San Diego, California. The honour recognises Bob’s unwavering commitment to advancing cross-sector collaboration and driving progress in care, access and research for patients affected by rare diseases around the world.
Bob joins an esteemed group of previous recipients, including Christine Lavery and Mark Dant, in being recognised for exceptional leadership in patient advocacy.
Official announcement from WORLDSymposium committee
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 storage disorders (LSDs) and other rare diseases, combining professional expertise with lived experience as the father of two sons with MPS II (Hunter syndrome). His journey began as a rare-disease parent before becoming a Trustee of the MPS Society and Chair of RDRP, ultimately stepping into the role of Group CEO in 2017 following the late Christine Lavery, MBE.
Under Bob’s leadership, the MPS Society has expanded its global influence, remaining a world-leading patient organisation that provides one-to-one support, psychological services and access to advocacy services across the UK and internationally. The Society has grown to a team of around 40 and has invested over £5 million in research since its founding in 1982, advancing treatments and care for lysosomal disease communities.
In addition to his Group CEO role, Bob also chairs RDRP (formerly MPS Commercial), a wholly owned, not-for-profit subsidiary of the MPS Society. RDRP makes clinical trials more accessible and patient-centric, while broadening research projects and partnerships across the rare disease community. The subsidiary provides global logistical support for patient participation in clinical trials and collaborates with industry to deliver innovative, patient-focused research. Under Bob’s guidance, RDRP generated more than £2million of additional funds, which are reinvested directly into the patient community under RDRP’s “patients before profits” model. These funds have provided additional patient services, including psychological support services, which delivered over 3000 hours of support in 2024 as part of the UK LSD Collaborative, and also expanded a young adults’ programme. RDRP is working in more than 20 countries, and the collected data has demonstrated that using RDRPs approach increases retention rates on clinical trials.
Bob’s leadership extends across the international lysosomal disease landscape. He serves as Chair of the Global LSD Initiative, Vice Chair of the LSD Collaborative, and sits on the Fabry International Network Board and the UK PMCPA Appeal Board as Patient Representative. From 2018 to 2024, he was Co-Chair of the International MPS Network (IMPSN), stepping down to focus on the global regulatory challenges of bringing new treatments to rare disease communities, particularly those affected by lysosomal disorders. Bob has taken a leading role outside of the USA in making the case for biomarkers to be adopted as surrogate endpoints in clinical trials, including a meeting jointly funded and organised with the IMPSN in Amsterdam in March 2025 with many of the key stakeholders including FDA, EMA and MHRA pharma and leading clinicians and PAGs. He continues to advocate globally for more patient-centric design of clinical trials.
A passionate speaker and tireless advocate, Bob continues to drive cross-sector collaboration and push boundaries to improve care, access, and research for patients worldwide. For him, advocacy is not just a role but a lifelong mission captured in his guiding principle: “A Rare Life Lived Better.”
About the WORLDSymposium Patient Advocate Leader (PAL) Award
Each year, WORLDSymposium recognises 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. Nominations are solicited annually from members of the lysosomal disease community, planning committee members and attendees of WORLDSymposium.
Past award recipients:
2025 Dean and Teryn Suhr, MLD Foundation
2025 Maria Kefalas, Calliope Joy Foundation, and Cure 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
