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International Alliance of ALS/MND Associations

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  • Understanding ALS/MND
    • What is ALS/MND
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    • Fundamental Rights for People with ALS/MND and Caregivers
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      • Nuedexta
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    • Drugs No Longer in Development
      • Amylyx – AMX0035
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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

  • Paul Launer, USA

    Paul Launer, USA

  • Bjarne Hytjanstorp, Norway

    Bjarne Hytjanstorp, Norway

  • Teddy Hanono Annie, Mexico

    Teddy Hanono Annie, Mexico

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Jose Rivero Muñoz, Mexico

    Jose Rivero Muñoz, Mexico

  • Mike Small, UK

    Mike Small, UK

  • Chirag Walia, India

    Chirag Walia, India
    ChiragWalia

  • Claudia Cominetti, Italy

    Claudia Cominetti, Italy

  • Josée Kolijn-de Man, Netherlands

    Josée Kolijn-de Man, Netherlands

  • Timmy, Belgium

    Timmy, Belgium

  • Mikey Stone, ALS

    Mikey Stone, ALS

  • Frank Taylor, USA

    Frank Taylor, USA

  • Cassio Fernando da Silva, Brazil

    Cassio Fernando da Silva, Brazil

  • Lombana, Spain

    Lombana, Spain

  • Andrea Zicchieri, Italy

    Andrea Zicchieri, Italy
    AndreaZicchieri_conSLAncioItaly

  • Daniela Maria Daverio, Argentina

    Daniela Maria Daverio, Argentina

  • Vincent Bourque, Canada

    Vincent Bourque, Canada
    vincent_bourque

  • Eddy Lefrancois, Canada

    Eddy Lefrancois, Canada

  • Antonio Ventriglia, Belgium

    Antonio Ventriglia, Belgium

  • Carlos Alberto Báez Murillo, Colombia

    Carlos Alberto Báez Murillo, Colombia

  • Jay Epstein, USA

    Jay Epstein, USA

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Ann Nicol, USA

    Ann Nicol, USA

  • Wilfried Leusing, Germany

    Wilfried Leusing, Germany

  • Norm MacIsaac, Canada

    Norm MacIsaac, Canada

  • Olga, Argentina

    Olga, Argentina

  • Laurie Petit-Jean, France

    Laurie Petit-Jean, France

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Alejandro Aquino, Argentina

    Alejandro Aquino, Argentina

  • Wiebke Braach, Germany

    Wiebke Braach, Germany

  • Michel Perrozzo, France

    Michel Perrozzo, France

  • Eddy LeFrançois, Canada

    Eddy LeFrançois, Canada

  • Dawn Morton, Scotland

    Dawn Morton, Scotland

  • Jette Odgaard Villemoes, Denmark

    Jette Odgaard Villemoes, Denmark

  • Marcelo Farinelli, Brazil

    Marcelo Farinelli, Brazil

  • Maurice LeClerc, Canada

    Maurice LeClerc, Canada

  • Joy Blakeley, Australia

    Joy Blakeley, Australia

  • Liong Ting Ngu, Malaysia

    Liong Ting Ngu, Malaysia

  • Jason Goodman, USA

    Jason Goodman, USA

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Torben Mikkelsen, Denmark

    Torben Mikkelsen, Denmark

  • Margarita Pizarro, Argentina

    Margarita Pizarro, Argentina

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Oliver Juenke, Germany

    Oliver Juenke, Germany

  • Roxana Canova, Argentina

    Roxana Canova, Argentina

  • Jorge Melo, Brazil

    Jorge Melo, Brazil

  • Maria Lucia Wood Saldanha, Brazil

    Maria Lucia Wood Saldanha, Brazil

  • PALS and CALS, Singapore

    PALS and CALS, Singapore

  • Enzo Maccarrone, Italy

    Enzo Maccarrone, Italy

  • Joanne Pratt, Australia

    Joanne Pratt, Australia

Learn more about the March of Faces

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