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 firstname.lastname@example.org.
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@example.com 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.
Adult Resource Fact Sheets
BiPAP and CPAP
Emotional Responses to Diagnosis
End of Life Care Resources
Family Coping Strategies
Medical Identification Information
Medications Fact Sheet
MPS Transplants (HSCT)
Orthopedic Problems in Children with MPS
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
Writing a Letter of Support