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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

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Christian Bär, Germany

    Christian Bär, Germany

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • 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

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • 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

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Ian Roberts

    Ian Roberts

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Art Eggert, USA

    Art Eggert, USA

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • David Bishop

    David Bishop

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Mark Miller

    Mark Miller

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Fabio Correia

    Fabio Correia

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

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

  • Elkin Ramiro Gaviria Muñoz, Diagnosed  December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Ann Nicol

    Ann Nicol

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

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

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

  • Chen Chun-Chin

    Chen Chun-Chin

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

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