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International Alliance of ALS/MND Associations

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  • What is ALS/MND
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  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
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      • 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.

Primary Sidebar

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

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

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

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

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Mark Miller

    Mark Miller

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

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

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

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

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

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Brian Parsons

    Brian Parsons

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Shay Rishoni

    Shay Rishoni

  • Norm MacIsaac,  ALS Society of Canada,  ALS Society of Quebec,  Diagnosed 2014

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014

  • Jack Buzby, USA

    Jack Buzby, USA

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

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

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

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

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

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Paul Launer, USA

    Paul Launer, USA

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

    Jette Odgaard Villemoes, Muskelsvindfonden, Denmark

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • 727747090571358167

    727747090571358167

  • Roy

    Roy
    roy

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

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

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Hollister

    Hollister
    hollister

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

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