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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
    • 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.

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

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Shay Rishoni

    Shay Rishoni

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

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

  • Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

    Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

  • Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

    Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Ian Gale, MND Australia

    Ian Gale, MND Australia

  • Willi Klein

    Willi Klein

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Fabio Correia

    Fabio Correia

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

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

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

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

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

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

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

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

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

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

  • Mauril Belanger

    Mauril Belanger

  • Steve

    Steve

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

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

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

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Ann Nicol

    Ann Nicol

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Daniel Hare

    Daniel Hare

  • IMG_2658

    IMG_2658

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Hollister

    Hollister
    hollister

  • Fabio Carvalho

    Fabio Carvalho

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