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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
    • Newsletters
    • Meetings
  • Awards

  • Sébastien Batiot, France

    Sébastien Batiot, France

  • Patrick Shuma, Kenya

    Patrick Shuma, Kenya

  • Fayette Underwood, USA

    Fayette Underwood, USA

  • David Watson, Scotland

    David Watson, Scotland

  • Mauril Bélanger, Canada

    Mauril Bélanger, Canada

  • Daniel Hare, USA

    Daniel Hare, USA

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Maria Lucia Wood Saldanha, Brazil

    Maria Lucia Wood Saldanha, Brazil

  • Claudia Cominetti, Italy

    Claudia Cominetti, Italy

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Jack Buzby, USA

    Jack Buzby, USA

  • Jay Epstein, USA

    Jay Epstein, USA

  • Dan Doctoroff, USA

    Dan Doctoroff, USA

  • Jorge Luis Fernández Romero, Mexico

    Jorge Luis Fernández Romero, Mexico

  • Joanne Pratt, Australia

    Joanne Pratt, Australia

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Yessenia Hernandez Mendoza, Mexico

    Yessenia Hernandez Mendoza, Mexico

  • JP

    JP

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • David Solomon, UK

    David Solomon, UK

  • Wiebke Braach, Germany

    Wiebke Braach, Germany

  • Zelina Brito, Brazil

    Zelina Brito, Brazil

  • Barry de Reuver, Netherlands

    Barry de Reuver, Netherlands

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Hanne Stenmose, Denmark

    Hanne Stenmose, Denmark

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Mona H. Bahus and Camilla Knoff Glomstad, Norway

    Mona H. Bahus and Camilla Knoff Glomstad, Norway

  • Bjarne Hytjanstorp, Norway

    Bjarne Hytjanstorp, Norway

  • Ada Garrido Benavidez, Mexico

    Ada Garrido Benavidez, Mexico

  • Irene McCaughey, Australia

    Irene McCaughey, Australia

  • Steven Spencer, New Zealand

    Steven Spencer, New Zealand

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Monica Soriano, Argentina

    Monica Soriano, Argentina

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Ching-Liang Chu, Taiwan

    Ching-Liang Chu, Taiwan

  • Bob Simonds, USA

    Bob Simonds, USA

  • Rob Tison, USA

    Rob Tison, USA

  • Enzo Maccarrone, Italy

    Enzo Maccarrone, Italy

  • Orly Dichoso, Canada

    Orly Dichoso, Canada

  • Peng Yi-Wen, Taiwan

    Peng Yi-Wen, Taiwan

  • Ali Var, Turkey

    Ali Var, Turkey

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Wilfried Leusing, Germany

    Wilfried Leusing, Germany

  • David Bishop, UK

    David Bishop, UK

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • John Dinon, Australia

    John Dinon, Australia

  • Sharon Corosanite, USA

    Sharon Corosanite, USA

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

Learn more about the March of Faces

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