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International Alliance of ALS/MND Associations

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    • Fundamental Rights for People with ALS/MND and Caregivers
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      • AB Science – Masitinib
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      • Nuedexta
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      • 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

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Cath Muir

    Cath Muir
    Cath

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

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

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Dad

    Dad

  • IMG_1211

    IMG_1211

  • unnamed

    unnamed

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Mauril Belanger

    Mauril Belanger

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • 727747090571358167

    727747090571358167

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Fabio Correia

    Fabio Correia

  • Liam Dwyer, England

    Liam Dwyer, England

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Steve

    Steve

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Bayley, Australia

    Bayley, Australia

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

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

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Roxana Canova, Diagnosed 2012 ,  Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 , Asociación ELA Argentina

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Chen Chun-Chin

    Chen Chun-Chin

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Roy

    Roy
    roy

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

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

Learn more about the March of Faces

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