The MND Insights Group and community surveys

At LifeArc our mission is to uncover the most important research questions and urgently address the needs of MND research, but we can’t do this alone, we need to hear from the real experts who live with the condition.

Overview

The support of those who take part in the Insights Group and surveys will make a huge difference and ensure that we capture important lived-experience insights that could unlock life-changing breakthroughs for people living with MND. 

By joining our MND Insights Group or participating in our community surveys and sharing their views and experiences, participants will play a direct role in assisting LifeArc to understand the most pressing needs of individuals with MND. Through collaboration, we aim to identify key MND research questions and prioritise research that can make a significant impact on the lives of people living with MND.

Registrations closed

Due to the large number of people who contributed to the survey and expressed an interest in joining the group we have now closed registrations. Thank you for your interest.

Who could take part

  • Those living with MND
  • Caregivers or supporters for someone with MND
  • People who have lost someone close to MND
  • Those with a gene that puts them at a high risk of developing MND, or those who have a family history of the condition

Please note that participants must be over 18-years old and living in the UK.

What does being a member of the MND Insights Group involve?

The MND Insights Group will meet online for approximately 1.5 hours every 2 to 3 months, and for up to 2 years if you’re able. People taking part will be invited to group discussions to share their experiences, to help us understand the challenges of living with MND and give their opinions on different MND research topics.

What does taking part in the community surveys involve?

Those who registered for the community surveys wished to share their personal experiences with MND but preferred not to participate in group discussions. These surveys will inquire about the most crucial needs of individuals living with MND and seek your opinions on the priorities for MND research. The surveys will take place every 4 to 5 months and happen for up to 2 years. Those who have registered to take part have not committed to completing every survey but are encouraged to complete as many as possible.

If you have any questions, please contact us at LifeArcTeam@pharmagenesis.com.

About us

LifeArc is a self-funded, not-for-profit, medical research organisation, and our ambition is to transform the way diseases are identified and treated.

Through our work and partnerships, we accelerate healthcare innovation by turning promising life science ideas into life-changing medical breakthroughs for the people who need them most.

Our MND Translational Challenge aims to revolutionise how the disease is detected, treated and managed, with the overall goal to make MND treatable. We know from experience that for medical research to be most effective, it is vital that the people we are trying to benefit are involved throughout.

We are partnering with Oxford PharmaGenesis, a HealthScience communications consultancy with expertise in patient engagement and bringing patient perspectives into medical research. They will help us to gather insights from across the MND community to help you to shape the future of MND research.

MND Insights Group registration

Due to the large number of people who have already expressed an interest in joining the MND Insights Group or taking part in the community surveys, we have now closed registrations.  Thank you for your interest.

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