These fact sheets were put together to help families and patients for every step along their journey. From initial diagnosis to end of life care resources. Please take a moment to review the individual sheets and if you have any questions please call us at the office at 919-806-0101 or email [email protected]

We are currently in the process of updating this page, if one of the fact sheets you are looking for is not currently available, please reach out at [email protected] to have one emailed to you. 

Click on the individual fact sheet title to read it in full, or download the sheet at the link on its page at the bottom. 

Fact Sheet Glossary

Able Act Overview

Adult Resource Fact Sheets


Cardiac Problems

Caregiver Support Resources

Carpal Tunnel Syndrome and Trigger Digits

Communicating Hydrocephalus

Emotional Responses to Diagnosis

End of Life Care Resources

Endocrine Disorders

Family Coping Strategies

General Research

Genetic Counseling

Grief Support

Guardianship Conservatorship

Hip Surgery

Medical Identification Information

Medications Fact Sheet

MPS Transplants (HSCT)

Newborn Screening

Otitis Media

Orthopedic Problems in Children with MPS

Pain Management

Palliative Care


Physical Therapy for Parents

Physical Therapy for Professionals


Prenatal and Preimplantation Diagnosis


Sharing the Diagnosis

Social Security and Disability

Special Education and Your Child’s IEP

Spica Cast Care

Stem Cell Transplant Questions


Tube Feeding Use of Medication

Wish Organizations

Writing a Letter of Support

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

Contact Us Family Support Programs