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International Alliance of ALS/MND Associations

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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 →

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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
    • Meetings
  • Awards

  • Fabio Carvalho, Brazil

    Fabio Carvalho, Brazil

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Eddy Lefrancois, Canada

    Eddy Lefrancois, Canada

  • Lucy Lintott, Scotland

    Lucy Lintott, Scotland

  • Josée Kolijn-de Man, Netherlands

    Josée Kolijn-de Man, Netherlands

  • Anderson Custodio Pinto, Brazil

    Anderson Custodio Pinto, Brazil

  • Feng Gin Sun, China

    Feng Gin Sun, China

  • Andrea Zicchieri, Italy

    Andrea Zicchieri, Italy
    AndreaZicchieri_conSLAncioItaly

  • Soledad Rodriguez, Spain

    Soledad Rodriguez, Spain

  • Duncan Bayly, Australia

    Duncan Bayly, Australia

  • Ian Roberts, Australia

    Ian Roberts, Australia

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Karl Hughes, Ireland

    Karl Hughes, Ireland

  • Lee Millard, England

    Lee Millard, England

  • Danny Reviers, Belgium

    Danny Reviers, Belgium
    DannyReviers

  • Jason Goodman, USA

    Jason Goodman, USA

  • Liz Ogg, Scotland

    Liz Ogg, Scotland

  • Jon Newsome, USA

    Jon Newsome, USA

  • Lineke Veenstra, Netherlands

    Lineke Veenstra, Netherlands

  • Conny van der Meijden, Netherlands

    Conny van der Meijden, Netherlands

  • Yolanda Armendariz, Mexico

    Yolanda Armendariz, Mexico

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Xian-Zhang Niu, China

    Xian-Zhang Niu, China

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Lombana, Spain

    Lombana, Spain

  • Elkin Gaviria, Colombia

    Elkin Gaviria, Colombia

  • Joyce Rusinak, USA

    Joyce Rusinak, USA

  • Dan Doctoroff, USA

    Dan Doctoroff, USA

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Jette Odgaard Villemoes, Denmark

    Jette Odgaard Villemoes, Denmark

  • Shay Rishoni, Netherlands

    Shay Rishoni, Netherlands

  • Willi Klein, UK

    Willi Klein, UK

  • Tso-Ta Huang, Taiwan

    Tso-Ta Huang, Taiwan

  • Angie Bordaen, Belgium

    Angie Bordaen, Belgium

  • Carlos Gomez Matallanas, Spain

    Carlos Gomez Matallanas, Spain

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Kirsty Gerlach, New Zealand

    Kirsty Gerlach, New Zealand

  • Maria Santos Garcia Tellez, Mexico

    Maria Santos Garcia Tellez, Mexico

  • Jette Odgaard Villemoes, Denmark

    Jette Odgaard Villemoes, Denmark

  • Dawn Morton, Scotland

    Dawn Morton, Scotland

  • Jack Buzby, USA

    Jack Buzby, USA

  • Maria Lucia Wood Saldanha, Brazil

    Maria Lucia Wood Saldanha, Brazil

  • Andrew Langat, Kenya

    Andrew Langat, Kenya

  • Calum Ferguson, Scotland

    Calum Ferguson, Scotland

  • Chen Yin Xue, Taiwan

    Chen Yin Xue, Taiwan

  • Anita Forte, USA

    Anita Forte, USA

  • Michel Perrozzo, France

    Michel Perrozzo, France

  • Bob Simonds, USA

    Bob Simonds, USA

  • Peng Yi-Wen, Taiwan

    Peng Yi-Wen, Taiwan

Learn more about the March of Faces

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