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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
      • 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. 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 2026–2029 Strategy sets out six priorities that will guide our work over the next four 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.

Our four-year roadmap for driving global collaboration toward a world free of ALS/MND.

Alliance Strategy 2026-2029: Our four-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

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Dick Dayton, USA

    Dick Dayton, USA

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Shay Rishoni

    Shay Rishoni

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Roy

    Roy
    roy

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • JP

    JP

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

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

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Liam Dwyer, England

    Liam Dwyer, England

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Osiel Mendoza, Diagnosed 2016 ,  ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 , ALS Therapy Development Institute, USA

  • Brian Parsons

    Brian Parsons

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • 727747090571358167

    727747090571358167

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

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

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

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

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

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

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

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

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

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

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

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

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