Fact Sheets

These fact sheets were put together to provide useful information on a variety of symptoms, situations, and conditions related to MPS and ML.  They are intended to provide answers to questions you may have along the way during any stage of your journey with MPS or ML.  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]. 

Fact Sheet Glossary

Able Act Overview
BiPAP and CPAP
Cardiac Problems
Caregiver Support Resources
Carpal Tunnel Syndrome and Trigger Digits
Communicating Hydrocephalus
Educational Resources and Accommodations
Emotional Responses to Diagnosis
Family Coping Strategies
Guardianship/Conservatorship: Protecting Your Adult Child with MPS or ML
HSCT
Hip Surgery and Aftercare
Initial Genetic Counseling Appointments
Medical Records File for Family
Melatonin
ML II and ML III
Newborn Screening
Otitis Media
Pain Management
Pamidronate
Physical Therapy for Children with MPS and ML
Port-a-Cath
Research Funding and Awards
Seizures
Social Security and Disability
Stem Cell Transplant Questions
Wish Organizations
Writing a Letter of Support