The National MPS Society announces a patient-owned, independent MPS registry, with initial funding provided by an unrestricted grant from Sanofi.
DURHAM, NC, UNITED STATES, February 5, 2026 /EINPresswire.com/ — The National MPS Society is proud to announce the development of a patient-owned and controlled, independent registry for mucopolysaccharidoses (MPS). Sanofi is proud to provide the initial funding for this Registry via an unrestricted grant with payments over the first few years of the new Registry’s existence. In addition, Sanofi will help support linkage to patient data from its historic MPS I registry into the new National MPS Society Registry when appropriate patient consents are in place.
Under the leadership of the National MPS Society, and with the support of an external Advisory Committee, the Registry will serve as a source of important real-world data to inform diagnostic and therapeutic advancements. As the Registry develops and evolves, it will include all forms of MPS and mucolipidosis types II and III (ML II/III). This agreement is the result of the National MPS Society and Sanofi’s shared vision of a registry that expands knowledge of these rare diseases for the benefit of all.
Terri Klein, President and CEO of the National MPS Society, highlighted the significance of this historic transition and the power of real-world data within a patient advocacy environment. “The National MPS Society has served MPS patients and their families for over 50 years. We are incredibly well-positioned to further advance the patient-driven work that Sanofi has pioneered over the last two decades to serve the broader global MPS and ML II/III communities. This is more than a transfer of data—it is a recognition that behind every registry entry is a child, an adult, or a family navigating the complexities of rare disease. Their voices matter. Their experiences matter. And now, they will have ownership and control over how their stories contribute to scientific progress. The Sanofi legacy will continue through this registry, ensuring that the foundation they built will serve families for decades to come.”
Alaa Hamed, Global Head of Medical Affairs Rare Diseases at Sanofi, expressed excitement about seeing the concept of an MPS registry evolve. “Sanofi has launched, developed, and maintained Rare Disease Registries for decades. The development of an MPS Registry owned and controlled by patients, for patients, is an exciting next step that will help continue what we have already started–integrated patient engagement in the generation of real-world evidence.”
Roberto Giugliani, Chairperson of the International MPS I Registry Board of Advisors, also praised the transition. “We look forward to continuing to build a body of scientific data and evidence that will help further develop our understanding of these diseases. Expanding the breadth and depth of the MPS I registry to include additional disease types and broader patient input is a step forward in scientific discovery for the patient community.”
Stephen Holland, Chairman of the Board of Directors of the National MPS Society and father of three MPS I children, expressed appreciation for Sanofi and reaffirmed the importance of the registry to the MPS and ML II/III community. “The National MPS Society is uniquely capable of maintaining and growing this registry as the premier patient organization serving all 11 MPS syndromes and ML II/III. We are grateful to Sanofi for their trust and support in assisting our development of the Registry, which will provide valuable patient data that is crucial in the understanding, improvement, and development of current and future therapies for our families.”
Next steps include forming the multi-stakeholder Advisory Committee for the Registry. The National MPS Society will provide updates as the project progresses.
Terri Klein
National MPS Society
734-358-6089
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