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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

  • Dad

    Dad

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Chen Chun-Chin

    Chen Chun-Chin

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Shay Rishoni

    Shay Rishoni

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Ian Roberts

    Ian Roberts

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Tison, USA

    Tison, USA

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • David Bishop

    David Bishop

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

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

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

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

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

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

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

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Paul Launer, USA

    Paul Launer, USA

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

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

Learn more about the March of Faces

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