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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 caregivers worldwide. These rights drive everything we do at the Alliance. 

Although the Alliance and our representatives understand that some of these conditions may not be immediately attainable in all countries, these documents represent the sets of rights all Alliance member organizations should adopt and promote as conditions, systems and resources allow.

Fundamental Rights Documents

The International Alliance of ALS/MND Associations supports the following fundamental rights for people living with ALS/MND and caregivers of people living with ALS/MND:

  • 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 Fundamental Rights for People Living with ALS/MND & Caregivers of People Living with ALS/MND Survey Report for detailed assessment of the level of agreement that fundamental rights are being met throughout the world. 

Fundamental Rights 2023 Results Webinar

In 2023, the International Alliance of ALS/MND Associations surveyed the community about the Fundamental Rights for People living with ALS/MND and Caregivers. Learn more about the data, strengths and weaknesses at a global level, the questions raised, the topics that require further attention, and how these compared to our 2021 survey.

 

Poster Presentations

Click below for the poster presentation on the overview of the results of the 2023 Alliance’s survey on the Fundamental Rights of People living with ALS/MND and Caregivers.

  • 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

You can also click below to view the 2022 poster presentations on the results of the Alliance’s 2021 Fundamental Rights survey.

  • An Assessment of Fundamental Rights for People Living with ALS/MND Worldwide – 2022
  • An Assessment of Fundamental Rights for Caregivers of People Living with ALS/MND (CALS) Worldwide- 2022

Convention on the Rights of Persons with Disabilities and Optional Protocol

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

The PALS and CALS Advisory Council and the Alliance support the “Convention on the Rights of Persons with Disabilities and Optional Protocol” as brought forward by the United Nations. The Convention supports the global promotion and protection of all human rights and fundamental freedoms for all people with disabilities, including those living with ALS/MND. Of note, the Alliance emphasizes the importance of Articles 9 and 19 surrounding a person’s independence and their rights to equal accessibility and participation in daily living and enjoyment of life.

By providing equal access to all aspects of daily living and services, people living with ALS/MND are able to live autonomously and independently. This means that people living with ALS/MND are able to make their own choices or decisions about their daily living, living arrangements, healthcare provision, and community involvement. Global provision of equal access to services such as transportation, housing, workplace environment, medical facilities, and information services can support both enjoyment and quality of life and support for a person’s independence.

In addition to supporting the Convention, these rights as they pertain to people living with ALS/MND are extrapolated into the Fundamental Rights of People Living with ALS/MND.

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Advocacy

  • Advocacy Toolkit

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Liam Dwyer, England

    Liam Dwyer, England

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

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

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Nicholas (Nic) Bowman, MND Association of South Africa,  Diagnosed 2016,  Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Ailsa Malcolm-Hutton, Diagnosed 2013,  MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013, MND Association of England, Wales and N Ireland

  • Mauril Belanger

    Mauril Belanger

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

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

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

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Roy

    Roy
    roy

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

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

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

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

  • JP

    JP

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

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

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Ian Roberts

    Ian Roberts

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • David Bishop

    David Bishop

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Cath Muir

    Cath Muir
    Cath

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

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

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Peng Yi-Wen

    Peng Yi-Wen

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

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