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Terri L. Klein, President and CEO at the National MPS Society, shared, “We are honored to welcome Sharon King as our new Chief Operating Officer. Sharon brings unmatched experience, heartfelt purpose, and a legacy of advocacy that resonates deeply with our mission. Her leadership is shaped by her lived experience and a deep understanding of the challenges faced by families with rare diseases. Her ability to lead with both strategy and compassion will strengthen every facet of our work. I am confident that Sharon will help the Society reach new heights as we continue to serve and support our families. We are thrilled to welcome her and look forward to the strength she will bring to the Society.”
Sharon is a longtime patient advocate and thought leader in rare disease, known for her ability to unite public officials, researchers, biotech representatives, industry leaders, and other advocates in the pursuit of rare disease treatment development and impactful public policies.
Her journey in advocacy began with the founding of Taylor’s Tale, an organization she co-founded in honor of her late daughter, Taylor, to raise awareness and funding for CLN1 disease (a form of Batten Disease) research. Under her leadership, Taylor’s Tale grew from a grassroots initiative into a force in the fight against rare diseases.
Beyond her work with Taylor’s Tale, Sharon has served in key roles that reflect her dedication to improving the lives of rare disease patients and caregivers. As Senior Lead of Advocacy at Aldevron, she worked to educate, connect, and improve understanding across the stakeholder community contributing to groundbreaking advancements.
Sharon is a state-appointed member of the N.C Advisory Council on Rare Diseases. The law that established the Council—the nation’s first—is named for her daughter. She is also a former member of the ASGCT Patient Education committee and serves on the Emily Whitehead Foundation Board of Directors. Her work reflects her deep understanding of the unique challenges faced by rare disease patients and their caregivers, as well as her unwavering commitment to promoting patient-centered, integrated care networks. Her efforts are grounded in personal experience and driven by a vision of improving lives through collaboration, education, and innovation.
As Chief Operating Officer, Sharon King brings a powerful combination of strategic leadership, lived experience, and deep compassion to the National MPS Society. Her expertise will be instrumental in advancing our mission to support individuals and families affected by MPS and ML. With her unwavering commitment to advocacy and innovation, Sharon will help guide our efforts to expand critical services, drive research, and strengthen the communities we serve.
This strategic appointment comes at a pivotal moment as the Society works to close the treatment gap for all families impacted by MPS and ML. With Sharon in this vital role, our team is better positioned to move forward with intention—developing new resources, enhancing care pathways, and ensuring families are never alone in their journey from diagnosis to treatment and beyond. The National MPS Society remains a steadfast partner for the road ahead. Together, we will work toward a brighter future for those we serve.
Terri Klein
National MPS Society
+1 919-806-0101
email us here
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