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Community Program Enrollment

We encourage providers to share our Community Enrollment Form with families affected by Hunter syndrome. By completing this form, families can stay connected with Project Alive, receive tailored resources, and learn about upcoming research opportunities, clinical trials, events, and support services. Enrollment helps us better understand the needs of the MPS II community and ensures that families never feel alone in their journey. With their permission, it also allows us to keep in touch in a meaningful, respectful way.

Enrollment Form

Medical

Caring for patients with Hunter syndrome (MPS II) requires a collaborative, multidisciplinary approach. Our goal is to support healthcare professionals with up-to-date clinical resources, care coordination tools, and educational materials that enhance patient outcomes and empower informed decision-making. Whether you're a specialist or a primary care provider, we invite you to explore our curated content designed to help you navigate the complexities of diagnosis, treatment, and long-term management. Together, we can make a meaningful impact on the lives of individuals and families affected by this rare disease.

MPS II 101 - HSCC 2025

Board certified pediatrician and MPS II parent Katey Hoffman gives a comprehensive presentation on Hunter syndrome.

Gene Therapy in MPS II - HSCC 2025

MPS II Biomarkers - HSCC 2025

Blood Brain Barrier Challenges & How Science is Advancing Treatment - HSCC 2025

Muenzer MPS Center

The Dr. Joseph Muenzer MPS Research and Treatment Center is focused on treating patients in the mucopolysaccharidosis (MPS) family of diseases and leading research in this area. The work is led by world-renowned MPS expert, Joseph Muenzer, MD, PhD, Bryson Distinguished Professor. Our team is dedicated to developing new avenues of treatment for children and adults with MPS, including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.

NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

U.S. Experts & Medical Centers for Hunter Syndrome (MPS II)

This document provides a curated list of leading physicians and medical centers in the United States that specialize in Hunter syndrome (MPS II). It includes contact information, areas of expertise, and locations to assist families and referring providers in identifying appropriate care.

Clinical Trials & Studies

Learn more about active clinical trials here. This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.

MPS II Active Clinical Trials

This page lists active clinical trials for MPS II. This page serves as informative only, Project Alive does not endorse any particular clinical trial. To find additional information, visit www.clinicaltrials.gov and search "mucopolysaccharidosis II" and look for trials that are recruiting. Once you click into a study, you will find the clinical trial site information near the bottom with contact information. Reach out to the listed contact to discuss the details of the trial.

Gene Therapy in MPS II - HSCC 2025

Timing is everything: Clinical courses of Hunter syndrome associated with age at initiation of therapy in a sibling pair

This study examines the outcomes of enzyme replacement therapy (ERT) in siblings who began treatment at different ages. Findings suggest that earlier initiation of ERT may lead to milder disease progression and fewer somatic complications.

Behaviors

Behavioral symptoms in individuals with Hunter syndrome can be complex and are often misunderstood. What may initially appear as defiance, hyperactivity, or even autism-like behaviors is frequently rooted in underlying neurological changes, sensory challenges, communication difficulties, or physical discomfort. This section offers guidance to help providers recognize the unique behavioral profile of MPS II, identify contributing factors, and implement compassionate, individualized support strategies. By understanding the “why” behind the behaviors, providers can offer more effective care and reduce frustration for both families and patients.

Accommodating Behaviors in the Classroom & Clinic, Presented by Julie Eisengart, PhD, LP

Julie Eisengart, PhD, LP, the Associate Professor of Pediatrics of the Neurodevelopmental Program in Rare Disease at the University of Minnesota, presents on Accommodating Behaviors in the Classroom & Clinic at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Therapy for Neurodegenerative Disorders, Presented by Lauren Newhouse, OTD, OTR/L, SWC

Lauren Newhouse, OTD, OTR/L, SWC, a pediatric occupational therapist, presents on Therapy for Neurodegenerative Disorders at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Therapy

Therapists play a vital role in supporting individuals with Hunter syndrome across every stage of development. Whether you’re a speech-language pathologist, occupational therapist, physical therapist, behavioral specialist, or other allied health professional, this section is designed with you in mind. Project Alive is committed to equipping therapists with practical tools, evidence-informed strategies, and insights from both clinical experts and caregiver experiences—because together, we can help children and families thrive.

Therapy for Neurodegenerative Disorders, Presented by Lauren Newhouse, OTD, OTR/L, SWC

Lauren Newhouse, OTD, OTR/L, SWC, a pediatric occupational therapist, presents on Therapy for Neurodegenerative Disorders at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Neurocognitive Testing - HSCC 2025

Caregiver Panel: Treatment Tips & Tricks - HSCC 2025

NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

Aging in Hunter Syndrome

The Arc is an organization dedicated to promoting and protecting the rights of people with intellectual and developmental disabilities. Their mission is to ensure full inclusion and participation in the community throughout individuals' lifetimes. They focus on advocacy, grassroots initiatives, and providing resources on various aspects of community life, such as education, employment, healthcare, and housing. The Arc also offers digital skills training, annual events, and a network of chapters across the U.S. to support their cause.

NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

Muenzer MPS Center

The Dr. Joseph Muenzer MPS Research and Treatment Center is focused on treating patients in the mucopolysaccharidosis (MPS) family of diseases and leading research in this area. The work is led by world-renowned MPS expert, Joseph Muenzer, MD, PhD, Bryson Distinguished Professor. Our team is dedicated to developing new avenues of treatment for children and adults with MPS, including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.

STUDY: Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience

Project Alive has funded the "Transitioning from Pediatric to Adult Health Care in Lysosomal Diseases: The MPS Experience" study. The study survey will be live soon. Please stay tuned for the study link. The attached file is the official study poster presented at WORLDSymposium in February, 2024.

The impact of Hunter syndrome on health-related quality of life

This research examines how MPS II affects patients' health, well-being, and life expectancy, highlighting the significant burden the disease places on individuals and their families.

Active Clinical Trials

Education

Educators are essential partners in helping students with Hunter syndrome reach their full potential. This section is designed to support teachers, special education staff, classroom aides, and school administrators with resources that promote understanding, inclusion, and individualized learning. At Project Alive, we believe that informed educators can make a lasting difference. These resources are here to help you advocate, adapt, and empower every learner—no matter their challenges.

This workshop discusses all things IEP. Experienced IEP advocate, Lindsay Vose, presents a step by step guide to IEPs.

IEP Workshop Slides

Accommodating Behaviors in the Classroom & Clinic, Presented by Julie Eisengart, PhD, LP

Julie Eisengart, PhD, LP, the Associate Professor of Pediatrics of the Neurodevelopmental Program in Rare Disease at the University of Minnesota, presents on Accommodating Behaviors in the Classroom & Clinic at the 2024 Hunter Syndrome Community Conference hosted by Project Alive.

Federal Education Rights

Speech or Language Impairment Eligibility

The Job Accommodation Network

The Job Accommodation Network (JAN) provides free, confidential guidance and resources to support workplace accommodations for individuals with disabilities. It helps employers, employees, and others navigate the Americans with Disabilities Act (ADA), explore accommodation solutions, and improve workplace inclusion. JAN offers training, best practices, webcasts, and tools like the “Situations and Solutions Finder” to share practical ideas for accommodating diverse needs.

Neurocognitive Testing - HSCC 2025

Disability Rights Education and Defense Fund

Disability Rights Education and Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities. Our mission is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.

Support

The National Disability Rights Network

The National Disability Rights Network (NDRN) is an organization that advocates for the civil and human rights of people with disabilities. It represents the Protection and Advocacy Systems (P&As) and Client Assistance Programs (CAPs), which are the largest providers of legal advocacy services for individuals with disabilities in the U.S. NDRN works to strengthen these networks through training, technical assistance, and promoting laws that protect disability rights. They also provide resources and support for individuals facing abuse, neglect, discrimination, or legal challenges related to their disabilities.

NORD - Living with a Rare Disease

NORD provides essential support for individuals with rare diseases, including financial assistance, caregiver resources, patient advocacy connections, and access to Centers of Excellence for specialized care. They also host community events like the Living Rare, Living Stronger Patient & Family Forum to foster support and awareness.

Rare Disease Caregivers

Rare Caregivers is a comprehensive online guide that addresses the distinct needs of family caregivers of loved ones with rare diseases. Rare Caregiver’s resources provide caregivers with tips on helping their loved ones as well as themselves.

Healthcare Hospitality Network

Phone: 800-318-8861 Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional member association with a mission to support homes that help and heal to be more effective in their service to patients and families. The HHN community includes House members and Supporting Partner members. Our House members provide lodging and support services to patients and their caregivers while they are receiving medical treatment away from their home communities. Our Supporting Partners are members that support the Healthcare Hospitality Houses in their services to their guests. HHN is the only professional membership association in North America with the specific mission to provide training, networking, and advocacy specifically for healthcare hospitality houses. Founded in the early 1980s and incorporated in 1986, HHN proudly serves over 100 member houses ranging from small houses to houses with over 100 guest rooms. Supporting Partners include Trivers Associates, Non-Profit Software, and Palmetto Linen.

EveryLife Foundation

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.

Global Genes’ story began with our loved ones. We are the friends, family and supporters of patients close to us who are affected by rare disease. We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community. Our mission is to provide patient advocates with a continuum of services to accelerate their path from early support and awareness through research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as a central core.

NeuroJourney uses four phases of a full life to help you understand the challenges you might face, anticipate the conversations you may have, and prepare for the decisions you may need to make as you determine goals of care for your child.

Muenzer MPS Center

The Dr. Joseph Muenzer MPS Research and Treatment Center is focused on treating patients in the mucopolysaccharidosis (MPS) family of diseases and leading research in this area. The work is led by world-renowned MPS expert, Joseph Muenzer, MD, PhD, Bryson Distinguished Professor. Our team is dedicated to developing new avenues of treatment for children and adults with MPS, including clinical trials to test new forms of intravenous enzyme replacement therapy as well as alternative therapies, such as gene therapy and intrathecal drug delivery devices.

Events

Coming Soon

Be sure to check out our social media platforms for updates and reminders about our events.

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Helping Hands Project Nomination

Project Alive aims to support the Hunter syndrome community, especially in times of need. If you know a community member that has a child in the midst of a long hospital stay, recently lost a loved one with Hunter syndrome, or going through other tough times directly related to their child's diagnosis, you can nominate them to receive support. Project Alive will send a small gift to help out. Typically, we send food gift cards, flowers to memorial services and funerals, gas gift cards, and the like. We are unable to help with bills, rent, or other cash needs. If you'd like to nominate someone, please submit the nomination at the link below.

Helping Hands Form

Newborn Screening

Newborn Screening ACT Sheet [Iduronate 2-Sulfatase Deficiency] Mucopolysaccharidosis Type II

Mucopolysaccharidosis Type II (MPS II), or Hunter syndrome, is an X-linked lysosomal storage disorder caused by a deficiency of the enzyme iduronate 2-sulfatase (I2S). Infants typically appear healthy at birth, but progressive symptoms emerge in early childhood. This ACT sheet provides guidance for clinicians after a positive newborn screening result for Mucopolysaccharidosis Type II (MPS II), also known as Hunter syndrome.

Mucopolysacchardosis Type II (MPS II): Decreased Iduronate 2-Sulfatase (I2S) activity

When a newborn screens positive for Mucopolysaccharidosis Type II (MPS II)—also known as Hunter syndrome—follow-up testing is essential to confirm or rule out the condition. This diagnostic pathway helps providers determine the correct diagnosis through a step-by-step approach. Early evaluation and diagnosis are critical for beginning supportive therapies and long-term care planning.

NCC Knowledge Nugget Series- Mucopolysaccharidosis Type II (MPS II) ACT Sheet

The ACMG ACT Sheets and Algorithms are a clinical decision support tool for non-genetic providers that describe the short-term actions a health professional should follow in communicating with the family and determining the appropriate steps in the follow-up of the infant that has screened positive. To offer a more active and engaging educational opportunity to accompany the ACT Sheets, the National Coordinating Center for the Regional Genetics Networks (NCC) is launching the Knowledge Nugget Series. These quick sessions allow providers to review the existing ACT Sheets and provide a deep dive into a particular ACT Sheet through an animated video. This video in the series is the Knowledge Nugget: MPS II ACT Sheet.