A Framework for Health Literacy and Increasing Quality of Life
The ALS/MND Health Literacy Map is a framework designed to support people living with ALS/MND (PALS) and their communities (CALS) in understanding the disease, navigating care, and improving quality of life.
It covers the many topics that individuals and their loved ones need to know when faced with an ALS/MND diagnosis. At the heart of this initiative are people living with ALS/MND and their communities, whose lived experience provides a unique and essential perspective.
Download the Health Literacy Map (PDF)
Explore the Health Literacy Map
The map brings together a wide range of interconnected topics across four key areas:
Understanding ALS/MND
Living with ALS/MND
Treating ALS/MND
Taking Action
Why Health Literacy Matters
Health literacy means having the ability to obtain, understand, and use health information and services to make informed decisions about one’s health and well-being. For PALS and CALS, this knowledge supports participation in care decisions and advocacy for their needs.
How the Alliance will use the map
The Health Literacy Map will help the Alliance:
- Identify gaps and opportunities to guide future educational initiatives
- Inform updates to our website, programs, and resources
- Ensure information is accessible, inclusive, and available globally
- Encourage collaboration and avoid duplication of effort across our community
Our Guiding Values
The framework is shaped by four key values that guide how we interpret and share information:
Human-centric
Inclusive, empathetic, and person-first
Global
Universally relevant, regardless of geography
Transparent
Open, collaborative, and community-informed
Accessible
Easy to consume, in multiple formats and languages
We hope this resource supports not just individuals and families, but also our wider ecosystem of healthcare professionals, researchers, industry partners, and Alliance members.
Acknowledgements
This project was developed by the ALS/MND Health Literacy Task Force and supported by a generous group of sponsors and expert contributors. We thank everyone who helped bring this framework to life.