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.