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International Alliance of ALS/MND Associations

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ALS/MND Health Literacy Map

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.

Preview of the ALS/MND Health Literacy Map. The full framework includes topics like understanding the disease, living with it, treatment, and advocacy.

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.

Primary Sidebar

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Shay Rishoni

    Shay Rishoni

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Jean

    Jean
    jean

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Ali Var, Turkey

    Ali Var, Turkey

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Ian Roberts

    Ian Roberts

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Bayley, Australia

    Bayley, Australia

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

    Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

  • IMG_1211

    IMG_1211

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Cath Muir

    Cath Muir
    Cath

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Osiel Mendoza, Diagnosed 2016 ,  ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 , ALS Therapy Development Institute, USA

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Daniel Hare

    Daniel Hare

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Lombana, Spain

    Lombana, Spain

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Christian Bär, Germany

    Christian Bär, Germany

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Steve

    Steve

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Dad

    Dad

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • unnamed

    unnamed

  • Susan Anderson, Diagnosed 2014 , Hope Loves Company,  USA

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

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