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International Alliance of ALS/MND Associations

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Diagnostic Delay (in development)

New Training Program Aims to Reduce ALS/MND Diagnostic Delays 

LONDON, EN & EDINBURGH, SC (June 9, 2025) – The International Alliance of ALS/MND Associations has announced a new training program to tackle one of the most urgent challenges for people with ALS/MND: delayed diagnosis. Sponsored by My Name’5 Doddie Foundation, this initiative will equip healthcare professionals with the knowledge and tools to identify ALS/MND symptoms sooner and accelerate referrals to specialists. 

Currently, it can take months to years for people with ALS/MND (Amyotrophic Lateral Sclerosis/Motor Neurone Disease) to receive a correct diagnosis — a delay that limits access to care, treatment, and clinical trials.  The Alliance is developing this new program to improve diagnosis time globally, particularly in those areas without ALS/MND speciality clinics. 

“Every day matters when you’re living with ALS/MND,” said Cathy Cummings, CEO of the International Alliance. “Our program will give healthcare professionals around the world the knowledge and confidence they need to identify ALS/MND symptoms earlier, so patients can get help as early as possible.” 

The training is designed for early-career doctors, secondary care specialists, and other frontline healthcare professionals most likely to encounter ALS/MND in its early stages. The curriculum, led by Orla Hardiman, Professor of Neurology at Trinity College Dublin, will address common problems that delay diagnosis, including: 

  • Missing early warning signs 
  • Misconceptions that “nothing can be done” for patients 
  • Inefficient referral pathways to specialists 

“My Name’5 Doddie Foundation is proud to support this important initiative,” said Nicola Roseman, CEO of My Name’5 Doddie Foundation. “Faster diagnosis means better care, more treatment options, and greater access to research opportunities for people living with MND.” 

The program will be developed in 2025, with pilot presentations at key events such as the Allied Health Professionals Forum in December. The full training will be available globally in 2026. 

About the International Alliance of ALS/MND Associations: The International Alliance of ALS/MND Associations is a global network of ALS/MND organizations working together to improve care, support, and advance research for people affected by ALS/MND worldwide. 

About My Name’5 Doddie Foundation: My Name’5 Doddie Foundation was established in November 2017 by rugby legend Doddie Weir OBE and his fellow trustees. The Foundation aims to fund research into effective treatments for MND and investigate potential cures, and provide grants to help individuals with MND live as fulfilled a life as possible.  

Primary Sidebar

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

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

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Dick Dayton, USA

    Dick Dayton, USA

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

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

  • Fabio Carvalho

    Fabio Carvalho

  • Cath Muir

    Cath Muir
    Cath

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

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

  • Christian Bär, Germany

    Christian Bär, Germany

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • IMG_1211

    IMG_1211

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Ailsa Malcolm-Hutton, Diagnosed 2013,  MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013, MND Association of England, Wales and N Ireland

  • Carlos Alberto Báez Murillo, ACELA, Colombia

    Carlos Alberto Báez Murillo, ACELA, Colombia

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Mark Miller

    Mark Miller

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Peng Yi-Wen

    Peng Yi-Wen

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Teddy Hanono Annie, Apoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

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

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

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Robbie Caliste, UK

    Robbie Caliste, UK

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

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Wilfried Leusing

    Wilfried Leusing

  • Jack Buzby, USA

    Jack Buzby, USA

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

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

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

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • John Dinon, MND Australia

    John Dinon, MND Australia

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