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International Alliance of ALS/MND Associations

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Fundamental Rights for People with ALS/MND and Caregivers

The Fundamental Rights represent the ideal for people living with ALS/MND and their caregivers worldwide. These rights guide everything we do at the Alliance.

We recognize that some of these rights may not be immediately attainable in all countries. Even so, they serve as a shared framework that all Alliance member organizations can adopt and promote as conditions, systems, and resources allow.

Participate in the 2025 Survey

The 2025 Fundamental Rights Survey is now open, and we invite you to share your experience as a person living with ALS/MND, a caregiver, or a blood relative. Your input provides valuable insights into where fundamental rights are being met, where gaps remain, and how advocacy can drive change. By participating, you contribute to global efforts to improve quality of life and identify opportunities for broader collaboration.

The survey is available in 16 languages, and it takes about 15 minutes to complete. This year includes a new section for blood relatives to help us understand the availability and use of genetics services.

Take the 2025 Survey now.

Our goal this year is 3,000 responses from around the world. Please take the survey, and then share it widely with your networks to help us reach this target, so we can gather the data needed to drive change.

Fundamental Rights Documents

The International Alliance of ALS/MND Associations supports the following fundamental rights:

  • Fundamental Rights for People Living with ALS/MND (last revised in January 2024 based on the 2023 survey results)
  • Fundamental Rights for Caregivers of People Living with ALS/MND (last revised in January 2024 based on the 2023 survey results)

Read the 2023 Survey Report for a detailed assessment of how these rights are being met worldwide. 

Fundamental Rights 2023 Results 

In 2023, the Alliance surveyed the ALS/MND community about these rights. Watch the webinar to explore global data, strengths, and gaps; topics needing further attention; and comparisons with our 2021 survey.

Poster Presentations

Explore poster presentations based on the 2023 Fundamental Rights survey results:

  • An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide – 2023
  • An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Quality of Life
  • An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Multidisciplinary Care
  • An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Voice Preservation
  • An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide: Genetics
  • Emergency Preparedness Toolkit for People Living with ALS/MND
  • An Assessment of Fundamental Rights for Caregivers of People Living with ALS/MND Worldwide

Convention on the Rights of Persons with Disabilities and Optional Protocol

  • Convention on the Rights of Persons with Disabilities and Optional Protocol

The Alliance and the PALS/CALS Advisory Council support the United Nations Convention on the Rights of Persons with Disabilities and Optional Protocol. This Convention promotes and protects the human rights and fundamental freedoms of all people with disabilities, including those living with ALS/MND.

We place special emphasis on Articles 9 and 19, which guarantee independence, accessibility, and participation in daily life. Equal access to services—such as transportation, housing, healthcare, workplace environments, and information—enables people with ALS/MND to live autonomously and make their own decisions.

These principles are embedded within the Fundamental Rights of People Living with ALS/MND.

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Advocacy

  • Advocacy Toolkit

  • Hollister

    Hollister
    hollister

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Philip Brindle,  MND Association,  Diagnosed 2015,  England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Ali Var, Turkey

    Ali Var, Turkey

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Roy

    Roy
    roy

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Bayley, Australia

    Bayley, Australia

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Christian Bär, Germany

    Christian Bär, Germany

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Angie Bordaen, Diagnosed 2014,  ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Art Eggert, USA

    Art Eggert, USA

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

Learn more about the March of Faces

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