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International Alliance of ALS/MND Associations

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Improving Regulatory Pathways

The International ALS/MND Alliance seeks to encourage all international regulatory agencies to develop a framework for global alignment in evaluating potential new therapies for people living with ALS/MND. The Alliance believes that the ALS/MND community and all stakeholders will benefit from a more cooperative global approach to evaluation of risks and benefits of novel therapies, especially given the global nature of drug development and clinical trial conduct. People living with ALS/MND – regardless of where they reside – have extraordinary unmet need and seek the fastest and widest possible access to potentially beneficial therapies. Given the devastating nature of ALS/MND, this community cannot wait for excessive procedural delays caused by sequential reviews and hand-offs.

Pivotal clinical trials in ALS/MND are often conducted internationally and these global trials are increasingly important for investigating the safety and effectiveness of ALS/MND drugs for approval. Future drug development may benefit by establishing a greater uniformity of new global standards of treatment, leading to the optimal design of these important trials. There should be a cooperative, harmonized, pathway to approval which increases effectiveness and expediency for treatments of ALS/MND guided by the following principles.

Please download our full report on improving regulatory pathways.

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Advocacy

  • Advocacy Toolkit

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

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

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

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

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

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

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • David Bishop

    David Bishop

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

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

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Mark Miller

    Mark Miller

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Willi Klein

    Willi Klein

  • Peng Yi-Wen

    Peng Yi-Wen

  • Chen Chun-Chin

    Chen Chun-Chin

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

  • Ian Roberts

    Ian Roberts

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • UK-Mahmood-Anwar

    UK-Mahmood-Anwar

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Cath Muir

    Cath Muir
    Cath

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Fabio Carvalho

    Fabio Carvalho

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Ali Var, Turkey

    Ali Var, Turkey

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Inta Grubb, Diagnosed 2014 - MND Australia

    Inta Grubb, Diagnosed 2014 – MND Australia

Learn more about the March of Faces

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