• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube

International Alliance of ALS/MND Associations

  • Members' Login
  • Contact
  • Join the Alliance
  • Donate
  • Understanding ALS/MND
    • What is ALS/MND
    • Genetics
    • Diagnosis
    • Glossary
    • Navigating the Community
  • Find a Member Association
  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
    • Research
      • Voice Preservation
      • Open Science
        • Open Label Extension
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
    • Advocacy
      • Advocacy Toolkit
      • Emergency Preparedness Toolkit
      • Equitable Access to Therapies
      • Recommendations for Trial Sponsors
    • Clinical Care
      • Genetic Counselling & Testing
      • Mental Health Support
      • Nursing and Symptom Management
      • Nutrition and Swallowing
      • Occupational Therapy and Activities of Daily Living
      • Physiotherapy and Mobility
      • Respiratory Care
      • Speech Therapy and Communication
      • Support for Family & Caregivers
      • Technology
      • Global Clinic Locator
    • Drugs in Development
      • AB Science – Masitinib
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
      • NeuroSense – PrimeC
      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
      • SOD1 Therapies & Trials
      • SPG302
      • 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
  • Support for Health Professionals
    • Breaking the News in ALS/MND
  • Events/Programs
    • Calendar of Events/Programs
    • Global Day Calendar
    • Alliance Meeting
    • Allied Professionals Forum
    • “Day in the Life Of” Suite
    • Alliance Webinars
    • ALS/MND Connect
    • March of Faces
    • Patient Fellows Program
    • Alliance Fellows
    • SEED Grant Program
    • International Symposium
  • About
    • Who We Are
    • ALS/MND Health Literacy Map
    • Board of Trustees
    • Councils, Forums & Committees
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Advocacy and Public Policy Forum
      • Research Directors Forum
      • Governance Committee
      • Finance Committee
    • Staff
    • History
    • Newsletter Archive
    • Awards
      • Forbes Norris Award
      • Humanitarian Award
      • Allied Health Professional Award
      • Student Innovation Award
  • Members
    • Member Registration
    • Forgot Password

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.

Primary Sidebar

Advocacy

  • Advocacy Toolkit

  • Ali Var, Turkey

    Ali Var, Turkey

  • Joyce Rusinak, USA

    Joyce Rusinak, USA

  • Semra Gokalp, Turkey

    Semra Gokalp, Turkey

  • Steven Spencer, New Zealand

    Steven Spencer, New Zealand

  • Glen Elison, USA

    Glen Elison, USA

  • Camilla Heiberg Freiberg, Denmark

    Camilla Heiberg Freiberg, Denmark

  • Peng Yi-Wen, Taiwan

    Peng Yi-Wen, Taiwan

  • Jack Buzby, USA

    Jack Buzby, USA

  • Animesh Kumar, India

    Animesh Kumar, India

  • Rolf Mauch, Switzerland

    Rolf Mauch, Switzerland

  • Oscar Mauricio Linares, Colombia

    Oscar Mauricio Linares, Colombia

  • Daniela Maria Daverio, Argentina

    Daniela Maria Daverio, Argentina

  • Chih Ching Darren Wong, Malaysia

    Chih Ching Darren Wong, Malaysia

  • Yessenia Hernandez Mendoza, Mexico

    Yessenia Hernandez Mendoza, Mexico

  • Andres Estevez Guersznik, Ireland

    Andres Estevez Guersznik, Ireland

  • Irene McCaughey, Australia

    Irene McCaughey, Australia

  • Chen Yin Xue, Taiwan

    Chen Yin Xue, Taiwan

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Mauril Belanger, Canada

    Mauril Belanger, Canada

  • Wilfried Leusing, Germany

    Wilfried Leusing, Germany

  • Gudjon Sigurdsson, Iceland

    Gudjon Sigurdsson, Iceland

  • Frank Taylor, USA

    Frank Taylor, USA

  • Mauricio Dorin, Argentina

    Mauricio Dorin, Argentina

  • Dr. Janmejay Pradhan, India

    Dr. Janmejay Pradhan, India

  • Roy Taylor, Ireland

    Roy Taylor, Ireland
    roy

  • Duncan Bayly, Australia

    Duncan Bayly, Australia

  • Orlando Ruiz, Colombia

    Orlando Ruiz, Colombia

  • Ann Nicol, USA

    Ann Nicol, USA

  • Danny Reviers, Belgium

    Danny Reviers, Belgium
    DannyReviers

  • Torben Mikkelsen, Denmark

    Torben Mikkelsen, Denmark

  • Alejandro Aquino, Argentina

    Alejandro Aquino, Argentina

  • Hanne Stenmose, Denmark

    Hanne Stenmose, Denmark

  • Chen Chun-Chin, Malaysia

    Chen Chun-Chin, Malaysia

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Aida Trzmiel de Guterman, Argentina

    Aida Trzmiel de Guterman, Argentina

  • Eddy Lefrancois, Canada

    Eddy Lefrancois, Canada

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Fayette Underwood, USA

    Fayette Underwood, USA

  • Manuel Arn, Switzerland

    Manuel Arn, Switzerland

  • John Sweeney, USA

    John Sweeney, USA

  • Ana María Zavala, Mexico

    Ana María Zavala, Mexico

  • Jay Epstein, USA

    Jay Epstein, USA

  • Angie Bordaen, Belgium

    Angie Bordaen, Belgium

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Vincent Bourque, Canada

    Vincent Bourque, Canada
    vincent_bourque

  • Lineke Veenstra, Netherlands

    Lineke Veenstra, Netherlands

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Paul Launer, USA

    Paul Launer, USA

  • Frank Bos, Netherlands

    Frank Bos, Netherlands

  • Graham Johnson, Australia

    Graham Johnson, Australia

Learn more about the March of Faces

Footer

Stay connected to the global ALS/MND community.

Subscribe to receive our newsletter and updates on how to get involved across the Alliance network.

 
This field is for validation purposes and should be left unchanged.
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2026 The International Alliance of ALS/MND Associations. All rights reserved.


Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login