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International Alliance of ALS/MND Associations

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      • Amylyx – AMX0035
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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

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Dick Dayton, USA

    Dick Dayton, USA

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

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

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

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

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

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

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Liam Dwyer, England

    Liam Dwyer, England

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Jon Newsome, USA

    Jon Newsome, USA

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • Willi Klein

    Willi Klein

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

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

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

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

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

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

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

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Paul Launer, USA

    Paul Launer, USA

  • IMG_2658

    IMG_2658

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Brian Parsons

    Brian Parsons

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Cath Muir

    Cath Muir
    Cath

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Michael Lee, Australia

    Michael Lee, Australia

Learn more about the March of Faces

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