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National MPS Society President and CEO Terri L. Klein to Receive 2021 Patient Advocate Leader Award

19 Oct, 2020

Presentation to take place Monday, February 8, 2021 at the 17th Annual WORLDSymposiumTM

October 17, 2020 – The National MPS Society is pleased to announce that President and CEO Terri L. Klein, NPGC will receive the WORLDSymposium 2021 Patient Advocate Leader (PAL) Award. The annual award recognizes exceptional patient advocacy leadership in the field of lysosomal disease. Since its inception in 2016, the award has honored individuals whose work has contributed directly to improving the lives of patients and families through disease awareness and education, community mobilization, non-profit development, patient care, and support programs.

Terri joined the Society as Director of Development in March 2009 and has served as President and CEO since January 2018. Under her leadership, membership of the Society has increased by over 310% in the last three years, and now provides services to over 2,000 households nationwide. In collaboration with her Board of Directors, Terri leads a team that provides crucial patient programs, including research and family support. Her key focus areas include diseases with no treatment, clinical application of bench and translational research, key stakeholder engagement, newborn screening, patient secured data, access to therapies, and advocacy at the state and federal level.

In addition to her role with the Society, Terri also co-chairs the International MPS Network (IMPSN), and COPA, part of the Lysosomal Disease Network. She is a member of the North Carolina Rare Disease Coalition and mentors’ other foundations that strengthen patient communities. Terri is also a founding member of the Mucolipidosis Research Collaborative Network. Recently formed in 2019, the novel group of scientists, researchers, clinicians, and patient advocates are working in tandem to discover the scientific answers to provide therapies for ML II and ML III.

“It is an honor to receive the Patient Advocacy Leadership Award. Finding solutions for the treatment of MPS and ML has driven my efforts over the years. I learned a long time ago that one person is capable of meaningful change, but a community with the core values to save a child’s life, is unstoppable. I am grateful every day for the researchers that champion our diseases, the science discoveries, and most importantly the global patient community that became our family 20 years ago.”

Terri will become the sixth recipient of the WORLDSymposium 2021 – PAL Award. Nominations are solicited annually from members of the lysosomal disease community, planning committee members, and attendees of WORLDSymposium. The engraved award will be presented on Monday, February 8, 2021 at the WORLDSymposium scientific meeting in San Diego, CA.

For more information on the 17th Annual WORLDSymposium and PAL award, visit