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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

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Jon Newsome, USA

    Jon Newsome, USA

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

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

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

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • IMG_1211

    IMG_1211

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Jeff Sutherland

    Jeff Sutherland
    jspic

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

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

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

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

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

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Art Eggert, USA

    Art Eggert, USA

  • Brian Parsons

    Brian Parsons

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

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

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

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

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Ali Var, Turkey

    Ali Var, Turkey

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

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

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Mark Miller

    Mark Miller

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

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

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

  • Chen Chun-Chin

    Chen Chun-Chin

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

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

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Wilfried Leusing

    Wilfried Leusing

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