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 the people living with ALS/MND and their communities, who inform us with the unique perspective of lived experience.
This tool brings together a wide range of interconnected topics, organized across four key areas:
- Understanding ALS/MND
- Living with ALS/MND
- Treating ALS/MND
- Taking Action
Download the Health Literacy Map
This full framework is available as a PDF: 📄Download the Health Literacy Map.
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 empowers participation in care decisions and advocacy for their needs.
This map will help the Alliance:
- Identify opportunity gaps and 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
This framework is shaped by 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.