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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

  • Mark Miller, UK

    Mark Miller, UK

  • Feng Gin Sun, China

    Feng Gin Sun, China

  • Maurice LeClerc, Canada

    Maurice LeClerc, Canada

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Juvenal Bayona Romero, Colombia

    Juvenal Bayona Romero, Colombia

  • Animesh Kumar, India

    Animesh Kumar, India

  • Philip Brindle, England

    Philip Brindle, England

  • Erwin Coppejans, Belgium

    Erwin Coppejans, Belgium

  • Daniela Maria Daverio, Argentina

    Daniela Maria Daverio, Argentina

  • Xian-Zhang Niu, China

    Xian-Zhang Niu, China

  • Josée Kolijn-de Man, Netherlands

    Josée Kolijn-de Man, Netherlands

  • Rob Tison, USA

    Rob Tison, USA

  • Joyce Rusinak, USA

    Joyce Rusinak, USA

  • Gisli Jonasson, Iceland

    Gisli Jonasson, Iceland

  • Steven Spencer, New Zealand

    Steven Spencer, New Zealand

  • Chris McCauley, Canada

    Chris McCauley, Canada

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Art Eggert, USA

    Art Eggert, USA

  • Fabio Carvalho, Brazil

    Fabio Carvalho, Brazil

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Semra Gokalp, Turkey

    Semra Gokalp, Turkey

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Liam Dwyer, England

    Liam Dwyer, England

  • Chih Ching Darren Wong, Malaysia

    Chih Ching Darren Wong, Malaysia

  • Paul Launer, USA

    Paul Launer, USA

  • Greg Heydet, USA

    Greg Heydet, USA

  • Charlie Dourney, USA

    Charlie Dourney, USA

  • Alejandro Aquino, Argentina

    Alejandro Aquino, Argentina

  • Ali Var, Turkey

    Ali Var, Turkey

  • Manuel Arn, Switzerland

    Manuel Arn, Switzerland

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Lineke Veenstra, Netherlands

    Lineke Veenstra, Netherlands

  • Mauril Bélanger, Canada

    Mauril Bélanger, Canada

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • David Solomon, UK

    David Solomon, UK

  • Dr. Shelly Hoover, USA

    Dr. Shelly Hoover, USA

  • Armando González Gómez, Colombia

    Armando González Gómez, Colombia

  • Ywan Dierick, Belgium

    Ywan Dierick, Belgium

  • Brian Parsons, Canada

    Brian Parsons, Canada

  • David Bishop, UK

    David Bishop, UK

  • Cassio Fernando da Silva, Brazil

    Cassio Fernando da Silva, Brazil

  • Enzo Maccarrone, Italy

    Enzo Maccarrone, Italy

  • Anita Forte, USA

    Anita Forte, USA

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Elkin Ramiro Gaviria Muñoz, Colombia

    Elkin Ramiro Gaviria Muñoz, Colombia

  • Rudiger Hanemann, Germany

    Rudiger Hanemann, Germany

  • Ana Lilia Rodriguez, Mexico

    Ana Lilia Rodriguez, Mexico

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Jette Odgaard Villemoes, Denmark

    Jette Odgaard Villemoes, Denmark

  • Bob Spurrier, USA

    Bob Spurrier, USA

Learn more about the March of Faces

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