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

International Alliance of ALS/MND Associations

  • Members' Login
  • Contact
  • Join the Alliance
  • Donate
  • What is ALS/MND
  • Find a Member Association
  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
    • Research
      • Voice Preservation
      • Open Science
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
      • Open Label Extension
    • Advocacy
      • Advocacy Toolkit
      • Emergency Preparedness Toolkit
      • Equitable Access to Therapies
      • Recommendations for Trial Sponsors
    • Clinical Care
      • Genetic Counselling & Testing
      • Mental Health Support
      • Nursing and Symptom Management
      • Nutrition and Swallowing
      • Occupational Therapy and Activities of Daily Living
      • Physiotherapy and Mobility
      • Respiratory Care
      • Speech Therapy and Communication
      • Support for Family & Caregivers
      • Technology
      • Global Clinic Locator
    • Drugs in Development
      • AB Science – Masitinib
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • Collaborative Medicinal Development – CuATSM
      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
      • NeuroSense – PrimeC
      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
      • SOD1 Therapies & Trials
      • T Regulatory Cell Therapies
      • Ulefnersen – Ionis Pharmaceuticals
    • Approved Drugs
      • Nuedexta
      • Radicava/Edaravone
      • Riluzole/Tiglutik
      • Rozebalamin/Methylcobalamin
      • Tofersen/Qalsody
    • Drugs No Longer in Development
      • Amylyx – AMX0035
      • Collaborative Medicinal Development – CuATSM
      • Cytokinetics – Reldesemtiv
      • Orphazyme – Arimoclomol
      • TUDCA Trial
  • Support for Health Professionals
    • Breaking the News in ALS/MND
    • Diagnostic Delay (in development)
  • Events/Programs
    • Calendar of Events/Programs
    • Alliance Meeting
    • Allied Professionals Forum
    • Alliance Webinars
    • ALS/MND Connect
    • Global Day Calendar
    • March of Faces
    • Patient Fellows Program
    • Global CRLI
    • International Symposium
  • About
    • Who We Are
    • ALS/MND Health Literacy Map
    • Board of Trustees
    • Advisory Councils/Committees
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Advocacy and Public Policy Forum
      • Research Directors Forum
      • Governance Committee
      • Finance Committee
    • Staff
    • History
    • Archives
      • Newsletters
      • Meetings
    • Awards
      • Forbes Norris Award
      • Humanitarian Award
      • Allied Health Professional Award
      • Student Innovation Award
  • Members
    • Member Registration
    • Forgot Password

Fundamental Rights for People with ALS/MND and Caregivers

The Fundamental Rights represent the ideal for people living with ALS/MND and their caregivers worldwide. These rights guide everything we do at the Alliance.

We recognize that some of these rights may not be immediately attainable in all countries. Even so, they serve as a shared framework that all Alliance member organizations can adopt and promote as conditions, systems, and resources allow.

Participate in the 2025 Survey

The 2025 Fundamental Rights Survey is now open, and we invite you to share your experience as a person living with ALS/MND, a caregiver, or a blood relative. Your input provides valuable insights into where fundamental rights are being met, where gaps remain, and how advocacy can drive change. By participating, you contribute to global efforts to improve quality of life and identify opportunities for broader collaboration.

The survey is available in 15 languages, and it takes about 15 minutes to complete. This year includes a new section for blood relatives to help us understand the availability and use of genetics services.

Take the 2025 Survey now.

Our goal this year is 3,000 responses from around the world. Please take the survey, and then share it widely with your networks to help us reach this target, so we can gather the data needed to drive change.

Fundamental Rights Documents

The International Alliance of ALS/MND Associations supports the following fundamental rights:

  • 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 Survey Report for a detailed assessment of how these rights are being met worldwide. 

Fundamental Rights 2023 Results 

In 2023, the Alliance surveyed the ALS/MND community about these rights. Watch the webinar to explore global data, strengths, and gaps; topics needing further attention; and comparisons with our 2021 survey.

Poster Presentations

Explore poster presentations based on the 2023 Fundamental Rights survey results:

  • 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

Convention on the Rights of Persons with Disabilities and Optional Protocol

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

The Alliance and the PALS/CALS Advisory Council support the United Nations Convention on the Rights of Persons with Disabilities and Optional Protocol. This Convention promotes and protects the human rights and fundamental freedoms of all people with disabilities, including those living with ALS/MND.

We place special emphasis on Articles 9 and 19, which guarantee independence, accessibility, and participation in daily life. Equal access to services—such as transportation, housing, healthcare, workplace environments, and information—enables people with ALS/MND to live autonomously and make their own decisions.

These principles are embedded within the Fundamental Rights of People Living with ALS/MND.

Primary Sidebar

Advocacy

  • Advocacy Toolkit

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • 727747090571358167

    727747090571358167

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

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • JP

    JP

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Art Eggert, USA

    Art Eggert, USA

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

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

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

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Michael Lee, Australia

    Michael Lee, Australia

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Ian Roberts

    Ian Roberts

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Dad

    Dad

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Brian Parsons

    Brian Parsons

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Tison, USA

    Tison, USA

Learn more about the March of Faces

Latest Tweets

  • Just now

Footer

Subscribe to our Bi-Monthly Newsletter

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

"*" indicates required fields

 
This field is for validation purposes and should be left unchanged.
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2025 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