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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
      • Open Science
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
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      • Advocacy Toolkit
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      • Global Clinic Locator
    • Drugs in Development
      • AB Science – Masitinib
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • Collaborative Medicinal Development – CuATSM
      • 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 to provide an international community for individual ALS/MND Associations globally. Our vision is world free of ALS/MND. We help members thrive by adding value to existing and future associations through the curation and creation of information, and by acting as a global gateway through which Alliance Members, PALS and CALS, and internal and external contributors connect.

Our two main focuses are Community and Capability and we can do this as we build our Capacity.

  • 2022-2025 Strategic Plan
  • 2023-2024 Annual Report

Our Vision

A World Free of ALS/MND

Our Purpose

The Alliance is a global network of ALS/MND associations informed by PALS and CALS that builds capability for its members and connects to external contributors.

Our Values

The Alliance is committed to the following values:
• Our service is to the organizations supporting people living with ALS/MND.
• We contribute to improving quality of life for people living with ALS/MND.
• We encourage, support and value innovation and research for people living with ALS/MND.
• We respect and value the contribution made by all members.
• We act responsibly, maintain professional integrity, and engage and collaborate with the ALS/MND community worldwide.

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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

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

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

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

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

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

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Daniel Hare

    Daniel Hare

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Hollister

    Hollister
    hollister

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

  • Chen Chun-Chin

    Chen Chun-Chin

  • Lombana, Spain

    Lombana, Spain

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

    Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Michael Lee, Australia

    Michael Lee, Australia

  • Liam Dwyer, England

    Liam Dwyer, England

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Tison, USA

    Tison, USA

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

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

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

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

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

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

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

  • Ali Var, Turkey

    Ali Var, Turkey

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Art Eggert, USA

    Art Eggert, USA

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Jean

    Jean
    jean

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

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

  • Liam Dwyer, England

    Liam Dwyer, England

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

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

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Yessenia Hernandez Mendoza, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Paul Launer, USA

    Paul Launer, USA

  • Andrietta

    Andrietta

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

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