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International Alliance of ALS/MND Associations

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  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
    • Research
      • Voice Preservation
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    • Drugs in Development
      • AB Science – Masitinib
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
      • NeuroSense – PrimeC
      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
      • SOD1 Therapies & Trials
      • SPG302
      • 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
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Who We Are

The International Alliance of ALS/MND Associations was founded in 1992. Today, we bring together almost 80 member organizations across the globe, united by a single purpose: driving global collaboration toward 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.

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 North Star: 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 for PALS and their community: 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.

Alliance-Strategy_2026-2028: Our three-year roadmap for driving global collaboration toward a world free of ALS/MND.

Annual Report 2024-2025: A review of the Alliance’s work and impact over the past year.

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About

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

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Ali Var, Turkey

    Ali Var, Turkey

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Cath Muir

    Cath Muir
    Cath

  • Margreth Burger-Saile, Diagnosed 2011,  ALS Schweiz,  Switzerland

    Margreth Burger-Saile, Diagnosed 2011, ALS Schweiz, Switzerland

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

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

  • Andrietta

    Andrietta

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Liam Dwyer, England

    Liam Dwyer, England

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Daniel Hare

    Daniel Hare

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Steve

    Steve

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Ali Var, Turkey

    Ali Var, Turkey

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • 83

    83

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • JP

    JP

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Fabio Carvalho

    Fabio Carvalho

  • Jack Buzby, USA

    Jack Buzby, USA

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • 727747090571358167

    727747090571358167

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

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