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International Alliance of ALS/MND Associations

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Fundamental Rights of People with ALS/MND and Caregivers

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 October 2022

Fundamental rights for caregivers of people living with ALS MND October 2022

Last revised October 2022

Poster Presentations

Click below to view the poster presentations on the results of the Alliance’s Fundamental Rights survey that gathered information from the community about the Fundamental Rights of People living with ALS/MND and Caregivers.

An Assessment of Fundamental Rights of People Living with ALS/MND Worldwide

An Assessment of Fundamental Rights of Caregivers of People Living with ALS/MND (CALS) Worldwide

Convention on the Rights of Persons with Disabilities and Optional Protocol

https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf

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

  • Art Eggert, USA

    Art Eggert, USA

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • 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

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • UK-Mahmood-Anwar

    UK-Mahmood-Anwar

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Ali Var, Turkey

    Ali Var, Turkey

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

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

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

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

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

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • David Bishop

    David Bishop

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Ian Roberts

    Ian Roberts

  • Peng Yi-Wen

    Peng Yi-Wen

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Marcel R. Wernard, Diagnosed 2016 - ALS Patients Connected, The Netherlands

    Marcel R. Wernard, Diagnosed 2016 – ALS Patients Connected, The Netherlands

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

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

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

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • 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

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

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

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

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