NeuroLifeNow is a digital platform created to routinely collect the stories of people with neurological conditions to share with decision makers.

The platform asks people with neurological conditions to submit responses to a short series of questions about their experience of health and care services every 2 months. The anonymised data will be published, to provide a real time view of if/how people with neurological conditions are accessing health and care services and will provide vital evidence to support our policy work influencing NHS commissioners, UK Governments and clinicians to initiate positive change.

NeuroLifeNow is unique in collecting responses regularly, helping to build a more accurate picture picture of life for people with a neurological condition, particularly long term fluctuating conditions like dystonia.

Who can take part?

People living with a neurological condition, people who have had a brain or spine injury, or those who are close to someone who does.

How long will it take?

Every 2 months you will be asked to submit responses to a short series of questions.

Closing date:


NeuroLifeNow is in the pilot phase so we are currently collating feedback from the dystonia community to help with the development of the platform. If you have any feedback, positive or negative, please get in touch.