• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • Twitter

International Alliance of ALS/MND Associations

  • Members’ Login
  • Contact
  • Join
  • Donate
  • What is ALS/MND?
  • Events
    • Alliance Meeting 2021
    • Allied Professionals Forum 2021
    • ALS/MND Connect 2020
    • International Symposium on ALS/MND 2020
    • Awards
    • Webinars
  • March of Faces
  • Find an Association
  • Support for Members
    • Partnership Programme
    • Mentorship Programme
    • Alliance Support Grant
  • Advocacy
    • Advocacy Toolkit
    • Rights of People with ALS/MND
    • Biogen – Tofersen
    • BrainStorm Cell Therapeutics – NurOwn
    • Collaborative Medicinal Development – CuATSM
    • Cytokinetics – Reldasemtiv
    • Right to Try
    • Unproven (Off-Label) Treatments
    • US FDA Orphan Drug Designation
    • T Regulatory Cell Therapies
    • Amylyx – AMX0035
    • Kadimastem – AstroRx
  • Global Day
  • Resources
    • Submit a Resource
  • Newsletters
  • About
    • About the Alliance
    • Newsletter subscription
    • Board of Directors
    • Committees/Advisory Councils
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Governance Committee
      • Budget and Finance Committee
    • Staff
    • History

Click here for Coronavirus (COVID-19) updates

Rights of People with ALS/MND

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

These fundamental rights represent the ideal for individuals living with ALS/MND worldwide.

Although the International Alliance and its representatives understand that some of these conditions might not be immediately attainable, this document represents the set of rights all Alliance member organisations should adopt and promote as conditions, systems and resources allow.

  1. People living with ALS/MND have access to highest quality care and treatment available within their healthcare system.
  2. People living with ALS/MND have access to information and education that will enable them and their caregivers to play an active role in making decisions about care and support.
  3. People living with ALS/MND have choice with respect to:
    1. health and support workers who are providing treatment or advice
    2. the place where care takes place and
    3. the type of treatment or support that is provided. This includes the right to accept, refuse, or discontinue treatment or intervention within the legal framework of one’s own country.
  4. People living with ALS/MND have the ability to provide input on the healthcare and support system, including policy-making, care delivery and the implementation of medical research procedures and protocols.
  5. People living with ALS/MND have the best quality of life possible, including access to preservation of personal dignity and to humane care, without discrimination.
  6. People living with ALS/MND have assurance of confidentiality and privacy regarding their medical records and information.
  7. Carers of people living with ALS/MND have access to the highest quality support available, including counseling and bereavement services, respite care and any available government benefits and entitlements.

International Alliance of ALS/MND Associations

Last revised July 2019


Share on Facebook      Share on Twitter

 

This document has received official endorsement from these members around the world:

MND AssociationThe ALS Association
Les Turner ALS FoundationMND Scotland
ALS Hope FoundationMND New Zealand
Aisla OnlusHope Loves Company
imndaALS Netherlands
MNDA SAFUNDELA
Taiwan MNDAIPG
Logo-FyadenmacALS Liga Belgie
MND AustraliaAsha Ek Hope
MND Association of Iceland
MND Association of Iceland
Asociacion ELA Argentina
TurkeyALSTDI-medium-fullname
IsrALSDGM_Logo_mit_Web
ALS CanadaALS Schweiz

Primary Sidebar

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • 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

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

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

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

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

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

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

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

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

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

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

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

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

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

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

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

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

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

  • Ian Roberts

    Ian Roberts

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

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

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • 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

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

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

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

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

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

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

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

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

Learn more about the March of Faces

Advocacy

  • Advocacy Toolkit
  • Rights of People with ALS/MND
  • Biogen – Tofersen
  • BrainStorm Cell Therapeutics – NurOwn
  • Collaborative Medicinal Development – CuATSM
  • Cytokinetics – Reldasemtiv
  • Right to Try
  • Unproven (Off-Label) Treatments
  • Amylyx – AMX0035
  • Kadimastem – AstroRx

Allied Professionals Forum Registration

The International Alliance of ALS/MND Associations will host a virtual Allied Professionals Forum spread over two days to accommodate time zones on 3 – 4 December 2020.

Click here to register for the Allied Professionals Forum

Footer

Support the Alliance

Please donate

Please consider making a donation to support our work. Thank you!

Latest Tweets

  • New post from our friend at 1 in 300! https://t.co/mGdIH5bA0B February 21, 2021 11:28 am
  • Hand & Elbow exercises for ALS/MND. Facebook LIVE starting shortly from https://t.co/zOGC4JFZm7 with Occupational T… https://t.co/q0pPQROvZE February 21, 2021 10:40 am
  • Upcoming Webinar: "Sharing Success: Fireside Chat with Award Winners" - https://t.co/67YD8archj February 17, 2021 9:28 pm

Keep in touch

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

Return to top of page
  • Disclaimer
  • Privacy notice & Cookies
  • Sitemap

Copyright © 2021 The International Alliance of ALS/MND Associations. All rights reserved.

Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login