Motor Neuron Disease & Rare Dementias

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By 2050, the world’s population of people aged 60 years and older will be 2.1 billion and the number of people living with dementia is expected to triple to 150 million. 

There is currently no cure for MND and very limited treatments and resources for rare dementias.

We are working to improve the quality of life for those living with MND and rare dementias by convening, collaborating and translating science into treatments and diagnostic solutions that reach patients faster.  

What do we want to achieve?

  • Contribute to the development of new treatments and diagnostics 
  • Identify those at risk of developing MND and rare dementias, detecting and diagnosing earlier 
  • Connect experts across MND and dementia research 
  • Unblock barriers that keep scientific discoveries from reaching patients 
  • Listen and learn from people living with MND and rare dementias  
  • Help people live longer with a better quality of life 

Discover expert and community-driven insights

MND biomarker roadmap report

We hosted a roundtable with MND biomarker experts to tackle key challenges and explore solutions. This report shares insights to advance the field.

MND insights report on how technology could help with daily challenges

These perspectives are now being used to inform funding calls, programmes and research design, ensuring scientific progress reflects what truly matters to people with MND and their families.

The LifeArc Translational Science Summit on MND and rare dementias

Across a series of engaging sessions, we explored cutting-edge approaches to therapeutic discovery, early diagnosis, digital solutions and patient impact.

MND Patient and campaigner, David Setters, on stage at the LifeArc Translational Science Summit for MND and Rare Dementias

How you can work with us

We partner and invest in the work of academics, charities, healthcare professionals and industry to:

Some of our partnerships and initiatives

UK DRI: A £30 million partnership for the development of new dementia treatments

Our partnership with the UK Dementia Research Institute (UK DRI) aims to accelerate the development of new diagnostic tests, treatments, and devices for people with dementia.

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Advancing ALS/MND prognosis, monitoring, and drug development 

We are collaborating with the ALS Therapy Development Institute (ALS TDI) to identify and validate biomarkers for ALS/MND.

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The MND Insights Group and community surveys

Uncovering the most important research questions and urgently address the needs of MND research, working with real experts who live with the condition.

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Learn more about our work in rare dementia and other neurodegenerative conditions

Who to contact

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