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International Alliance of ALS/MND Associations

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      • Amylyx – AMX0035
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@rachel

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Registered: 12 years, 7 months ago


Forums

Topics Started: 2

Replies Created: 0

Forum Role: Keymaster

Primary Sidebar

Advocacy

  • Advocacy Toolkit

Approved Drugs

  • Nuedexta
  • Radicava/Edaravone
  • Riluzole/Tiglutik
  • Rozebalamin/Methylcobalamin
  • Tofersen/Qalsody

Drugs in Development

  • AB Science – Masitinib
  • BrainStorm Cell Therapeutics – NurOwn
  • Clene Nanomedicine – CNM-Au8
  • ILB – Tikomed
  • Kadimastem – AstroRx
  • Methylcobalamin
  • 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

Care services

  • 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

Support for members

  • Alliance Support Grant
  • About the meetings

Events/Programs

  • Calendar of Events/Programs
  • Alliance Webinars
  • Alliance Meeting
  • Allied Professionals Forum
  • ALS/MND Connect
  • Global Day Calendar
  • March of Faces
  • International Symposium

About

  • Who We Are
  • Board of Trustees
  • Advisory Councils/Committees
    • PALS and CALS Advisory Council
    • Scientific Advisory Council
    • Advocacy and Public Policy Forum
    • Research Directors Forum
    • Governance Committee
    • Finance Committee
  • Staff
  • History
  • Archives
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  • Awards

Upcoming Events

Jun 23
6:00 pm - 7:00 pm EDT

Member Forum: Workforce Challenges

Jun 25
1:00 pm - 2:00 pm ADT

The ALS Turbocharged Living Scale: A New Way to Measure What Matters

Jul 14
7:00 am - 8:30 am EDT

Member Roundtable: From Principles to Practice – Building the Baseline Model for ALS/MND Clinics

Aug 19
8:00 am - 9:00 am EDT

Member Forum: Equitable Access to Care

Aug 19
6:00 pm - 7:00 pm EDT

Member Forum: Equitable Access to Care

View Calendar

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • Art Eggert, USA

    Art Eggert, USA

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

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

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Liam Dwyer, England

    Liam Dwyer, England

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Dad

    Dad

  • Ian Roberts

    Ian Roberts

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

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

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

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Brian Parsons

    Brian Parsons

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

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

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Hollister

    Hollister
    hollister

  • Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

    Aida Trzmiel de Guterman, Asociacion ELA Argentina, Diagnosed 2007, Argentina

  • Paul Launer, USA

    Paul Launer, USA

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

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

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Angie Bordaen, Diagnosed 2014,  ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014, ALS Liga België, Belgium

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

Learn more about the March of Faces

Coronavirus (COVID-19) Resources

Instructions

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Drugs No Longer in Development

  • Amylyx – AMX0035
  • Collaborative Medicinal Development – CuATSM
  • Cytokinetics – Reldesemtiv
  • Orphazyme – Arimoclomol
  • TUDCA Trial

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