• 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
  • Understanding ALS/MND
    • What is ALS/MND
    • Genetics
    • Diagnosis
    • Glossary
    • Navigating the Community
  • Find a Member Association
  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
    • Research
      • Clinical Trial Registry Accuracy and Maintenance in ALS/MND Research
      • Voice Preservation
      • Open Science
        • Open Label Extension
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
    • 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
      • Masitinib
      • NurOwn
      • CNM-Au8
      • ILB
      • AstroRx
      • Neuronata-R / Lenzumestrocel
      • PrimeC
      • NP001
      • Pridopidine
      • SOD1 Therapies and Trials
      • C9orf72 Therapies and Trials
      • SPG302
      • Regulatory T Cell Enhancing Therapies
      • Ulefnersen
    • Approved Drugs
      • Nuedexta
      • Radicava / Edaravone
      • Riluzole / Tiglutik
      • Rozebalamin / Methylcobalamin
      • Tofersen / Qalsody
    • Drugs No Longer in Development
      • AMX0035
      • Reldesemtiv
      • Arimoclomol
      • TUDCA
      • CuATSM
  • Support for Health Professionals
    • Breaking the News in ALS/MND
    • R.A.C.E. to Diagnose ALS/MND
  • Programs & Events
    • Calendar of Events
    • Global Day Calendar
    • Alliance Meeting
    • Allied Professionals Forum
    • “Day in the Life Of” Suite
    • Alliance Webinars
    • ALS/MND Connect
    • March of Faces
    • Patient Fellows Program
    • Alliance Fellows
    • SEED Grant Program
  • About
    • Who We Are
    • ALS/MND Health Literacy Map
    • Board of Trustees
    • Councils, Forums & Committees
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Advocacy and Public Policy Forum
      • Research Directors Forum
      • Governance Committee
      • Finance Committee
    • Staff
    • History
    • Newsletter Archive
    • Awards
      • Forbes Norris Award
      • Humanitarian Award
      • Allied Health Professional Award
      • Student Innovation Award
  • Members
    • Member Registration
    • Forgot Password

Who We Are

The International Alliance of ALS/MND Associations was founded in 1992. Today, we bring together more than 80 member organizations across the globe, united by a single vision: a world free of ALS/MND.

Everything we do is centred around the fundamental rights of people affected by ALS/MND — the belief that where you live should not determine the quality of care, support, and respect you receive.

We work alongside our members to raise awareness, coordinate research, advocate for equitable access to care and therapies, and ensure that under-represented communities are not left behind. Our global reach means that knowledge, tools, and best practices developed anywhere in the world can benefit people everywhere.

What Guides Us

Our Vision

A world free of ALS/MND

Our Aspiration

To drive global collaboration

Our Reach

We work globally, serving the entire ALS/MND community — people living with the disease, caregivers, clinicians, researchers, and the organizations that support them.

Our Purpose

Everything we do is oriented around one purpose: accelerating progress on the Fundamental Rights of people affected by ALS/MND, everywhere in the world.

Our Strategic Priorities

The Alliance’s 2026–2028 Strategy sets out six priorities that will guide our work over the coming years.

Bring focus to quality of life

We advocate more effectively to improve outcomes by understanding what people living with ALS/MND (PALS) and their community identify as important.

Include under-represented communities

By working alongside under-represented communities, we ensure meaningful inclusion across the globe so geography does not dictate destiny.

Increase awareness of ALS/MND

By raising awareness of ALS/MND and the Alliance, we strengthen our advocacy efforts at the global level, which supports our members at the local level.

Facilitate research coordination

By bringing people together and facilitating research coordination across the globe, we deepen our understanding of ALS/MND and accelerate research.

Leverage collective capacity

By coordinating with our members and partnering in strategic international collaborations, we leverage collective knowledge and resources — positioning the Alliance as a trusted source of evidence-based information, best practices, and tools.

Grow the community

By identifying and inviting ALS/MND organizations not yet part of the Alliance, and by supporting the creation and development of new organizations, we expand the community working toward a world free of ALS/MND.

Learn More

Alliance Strategy 2026–2028

Our three-year roadmap for driving global collaboration toward a world free of ALS/MND.

Read the Strategy →

Annual Report 2024–2025

A review of the Alliance’s work and impact over the past year.

Read the Annual Report →

Primary Sidebar

About

  • Who We Are
  • Board of Trustees
  • Councils, Forums & Committees
    • PALS and CALS Advisory Council
    • Scientific Advisory Council
    • Advocacy and Public Policy Forum
    • Research Directors Forum
    • Governance Committee
    • Finance Committee
  • Staff
  • History
  • Newsletter Archive
    • Newsletters
    • Meetings
  • Awards

  • Brian Parsons, Canada

    Brian Parsons, Canada

  • Hans Dieter Olszewski, Germany

    Hans Dieter Olszewski, Germany

  • Jeff Sutherland, Canada

    Jeff Sutherland, Canada
    jspic

  • Fabio Correia, Brazil

    Fabio Correia, Brazil

  • Gisli Jonasson, Iceland

    Gisli Jonasson, Iceland

  • Jack Buzby, USA

    Jack Buzby, USA

  • Elkin Gaviria, Colombia

    Elkin Gaviria, Colombia

  • Anderson Custodio Pinto, Brazil

    Anderson Custodio Pinto, Brazil

  • Richard Clark, New Zealand

    Richard Clark, New Zealand

  • Steve

    Steve

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Liam Dwyer, England

    Liam Dwyer, England

  • Fabio Carvalho, Brazil

    Fabio Carvalho, Brazil

  • Orlando Ruiz, Colombia

    Orlando Ruiz, Colombia

  • Ana María Zavala, Mexico

    Ana María Zavala, Mexico

  • Susan Anderson, USA

    Susan Anderson, USA

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Barry de Reuver, Netherlands

    Barry de Reuver, Netherlands

  • Fabio Carvalho, Brazil

    Fabio Carvalho, Brazil

  • Michel Perrozzo, France

    Michel Perrozzo, France

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Francisco Perez Palop, Spain

    Francisco Perez Palop, Spain

  • Eddy LeFrançois, Canada

    Eddy LeFrançois, Canada

  • Alejandro Aquino, Argentina

    Alejandro Aquino, Argentina

  • Jo Knowlton, Scotland

    Jo Knowlton, Scotland

  • Mike Rannie, Canada

    Mike Rannie, Canada

  • Vincent Bourque, Canada

    Vincent Bourque, Canada
    vincent_bourque

  • Liong Ting Ngu, Malaysia

    Liong Ting Ngu, Malaysia

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Steven Spencer, New Zealand

    Steven Spencer, New Zealand

  • Chen Chun-Chin, Malaysia

    Chen Chun-Chin, Malaysia

  • Mikey Stone, ALS

    Mikey Stone, ALS

  • Ali Var, Turkey

    Ali Var, Turkey

  • Chen Yin Xue, Taiwan

    Chen Yin Xue, Taiwan

  • Jon Newsome, USA

    Jon Newsome, USA

  • Manuel Arn, Switzerland

    Manuel Arn, Switzerland

  • Chih Ching Darren Wong, Malaysia

    Chih Ching Darren Wong, Malaysia

  • Lachlan Terry, Australia

    Lachlan Terry, Australia

  • Elkin Ramiro Gaviria Muñoz, Colombia

    Elkin Ramiro Gaviria Muñoz, Colombia

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • João Marcos Andrietta, Brazil

    João Marcos Andrietta, Brazil

  • Claudette Sturk, Canada

    Claudette Sturk, Canada
    Picture2

  • Willi Klein, UK

    Willi Klein, UK

  • Rob Tison, USA

    Rob Tison, USA

  • Dr. Shelly Hoover, USA

    Dr. Shelly Hoover, USA

  • Kirsty Gerlach, New Zealand

    Kirsty Gerlach, New Zealand

  • Philip Brindle, England

    Philip Brindle, England

  • John Dinon, Australia

    John Dinon, Australia

Learn more about the March of Faces

Footer

Stay connected to the global ALS/MND community.

Subscribe to receive our newsletter and updates on how to get involved across the Alliance network.

 
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 © 2026 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