Adults with MPS and Related Diseases

To address the unique needs, challenges, and goals of adolescents and adults living with MPS and related lysosomal storage disorders.

Transition to Adulthood Toolkit

Introduction to the Transition to Adulthood Toolkit and its role in helping young people prepare for adult life.

Module 1:

Personal & Medical Management

Module 2:

Education & Employment

Module 3:

Independent Living

Module 4:

Relationships & Social Support

Module 5:

Resources for Healthcare Providers

Ongoing Adult Support

Introduction to resources designed to support adults living with MPS and related disorders throughout adulthood.

Mental Health & Coping Strategies

Mental health resources

Coping tools

Wellness materials

Navigating Adult Healthcare Systems

Healthcare navigation resources

Adult care planning materials

Healthcare transition support

Dating, Relationships & Family Planning

Educational resources

Planning tools

Support materials

Vocational Training & Employment Supports

Employment resources

Career development materials

Workplace support information

Aging with MPS: Research & Emerging Topics

Research updates

Aging-related resources

Emerging areas of study

Adult Peer Networks & Story Sharing

Peer support opportunities

Community connections

Personal stories and lived experiences

Quick Access Downloads

All checklists and templates are available within their respective modules of the Transition to Adult Toolkit — and can also be accessed directly below.