Mucopolysaccharidosis (MPS) Center
World Renowned Expertise in Research and Clinical Care for Hurler Syndrome
The Mucopolysaccharidosis (MPS) Center at the University of Minnesota is internationally recognized for its groundbreaking work in the diagnosis, treatment, and research of mucopolysaccharidosis disorders—particularly Hurler syndrome (MPS I). As the first institution in the United States to perform hematopoietic stem cell transplants for MPS, we have completed over 250 transplants for Hurler syndrome to date. Our unwavering commitment to advancing the field is reflected in our innovative therapies, collaborative research, and comprehensive, patient-centered care.
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Contact Us
Learn about our rare disease care and services.
Schedule an appointment:
Intake Coordinator
612-273-2800 (Option 2)
or 888-601-0787
Email: [email protected].
Learn About MPS
Mucopolysaccharidoses (MPS) are a group of rare, inherited lysosomal storage disorders caused by the body’s inability to produce specific enzymes needed to break down glycosaminoglycans (GAGs), complex sugar molecules that help build connective tissue. When these enzymes are missing or malfunctioning, GAGs accumulate in cells, leading to progressive damage to the brain, heart, bones, and other organs.
There are several types of MPS, each associated with a different enzyme deficiency and clinical presentation.
- MPS I (Hurler, Hurler-Scheie, and Scheie syndromes)
- MPS II (Hunter syndrome)
- MPS III (Sanfilippo syndrome)
- MPS IV (Morquio syndrome)
- MPS VI (Maroteaux-Lamy syndrome)
- MPS VII (Sly syndrome)
- MPS IX (Hyaluronidase deficiency)
Children with MPS lack the enzymes necessary to break down certain complex molecules. Without treatment, these molecules accumulate and cause irreversible damage to multiple organ systems. Early diagnosis and intervention are critical to improving outcomes.
There are an estimated 7,000 rare diseases, affecting approximately 30 million people in the United States alone. Families facing these diagnoses need more than just medical care, they need advocacy, awareness, research, and access to specialized centers.
M Health Fairview Masonic Children’s Hospital is proud to be recognized as a Rare Disease Center of Excellence, offering hope and expert care to families navigating these complex conditions.
At the MPS Center, we provide individualized, patient-centered care through a collaborative, multidisciplinary team of specialists. Each patient benefits from a coordinated approach that addresses the complex and evolving needs associated with mucopolysaccharidosis (MPS). Our expert team includes professionals in:
- Audiology
- Blood and Marrow Transplantation
- Cardiology
- Ear, Nose, and Throat (ENT)
- Endocrinology
- Genetics
- Neurology
- Neuropsychology
- Neuroradiology
- Neurosurgery
- Ophthalmology
- Orthopedic Surgery (hand, back, lower extremities)
- Pulmonology
- Dentistry
Newborn Screening and Early Intervention
Early detection is critical in improving outcomes for children with MPS. In 2016, MPS was added to the Recommended Uniform Screening Panel (RUSP), enabling newborn screening programs across the United States to identify affected infants shortly after birth.
Our team works in close partnership with the Minnesota Department of Health Newborn Screening Program to provide timely evaluation, diagnosis, and intervention. Early treatment can significantly alter the course of the disease, and we are committed to guiding families through this process with compassion and expertise.
If your child has received a positive newborn screening result or a biochemical diagnosis of MPS I/Hurler syndrome, we are here to help, regardless of your location. Learn more about our comprehensive care for rare diseases or schedule an appointment at the contact above.
MPS Newborn Screening Meeting
The MPS Newborn Screening Meeting is held every other year by the University of Minnesota MPS Center. This event brings together professionals working in genetics, pediatrics, and rare disease research to discuss current topics in mucopolysaccharidosis (MPS) and newborn screening.
The meeting provides a space to share updates, research findings, and practical approaches in the field. Attendees include clinicians, researchers, and public health professionals who are interested in improving early detection and care for individuals with MPS.
A presentation about Lysogene gene therapy.
Research poster displays and informational booths.
Professionals discussing a research poster.
Dr. Paul Orchard presiding.
Continuing Education for Healthcare Professionals
Explore a series of informative courses on Mucopolysaccharidosis I (MPS I), presented by Paul Orchard, MD, designed to support healthcare professionals in understanding and managing this rare condition. These courses are a valuable resources for staying informed on key topics:
- Diagnosing MPS I – Recognizing clinical signs and diagnostic pathways
- Treating MPS I – Overview of current treatment approaches
- Newborn Screening – The importance of early identification
- Genetic Counseling – Communicating genetic information to families
These courses are ideal for clinicians, nurses, and genetic counselors seeking to expand their knowledge of MPS I.
News & Media
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