The CRAN is still in the planning stages, so these pages are for information only. Registration to join the Network is not yet open. Thank you for your patience. If you have any questions, please contact us at [email protected]. 

Our MND Community Research Advisory Network (CRAN) brings together people living with and affected by MND with researchers, clinicians and the wider community. Our members help shape our research programme, from reviewing the information we share to becoming involved in long-term projects that will benefit the MND community.

Who will our members be?

Anyone who is living with or affected by MND.

We want to make sure the CRAN has diverse membership and is representative of different backgrounds and cultures. This will help us to ensure that our research, and the information we provide, is relevant, meaningful and accessible to as many people as possible and we encourage members of the LGBT+ and BAME communities to join. It doesn't matter if you don't have a science or research background, your lived experience makes you an expert.

Once membership is open, we want to hear from you if you:

  • want to help shape the work of the research team,
  • are happy to share your views and listen to others,
  • want to learn more about MND research
  • want to work with MND researchers and other people with MND,
  • will work with us to improve our Research Advisory Network.

We also welcome researchers and healthcare professionals to join in an advisory and supportive capacity. We aim to provide help and support, through the group, for researchers looking for people living with and affected by MND to become involved in all stages of their research. It is our hope that involving the MND community will produce higher quality, more relevant research that best benefits the people who need it most.

Benefits of membership

Members will enjoy the following:

  • regular engagement with MND researchers,
  • input into the work of the research team,
  • exclusive access to a member page,
  • suggestions on workshops, face-to-face meetings and webinars on research topics that interest you,
  • training that will help you carry out your role in the group.

What will I be doing?

We want to make sure that the work of the research team is informed by people like you. Your experiences give personal understanding to the sort of research information that people living with and affected by MND need and want. Becoming a member of the CRAN is a great way to make sure we are doing this. We also hope that members will work with researchers to help shape their research projects, and we're working on ways to support this.

Although there is no expectation of commitment, we will offer a range of different roles and opportunities for you to share your skills and experience, and some roles will be more involved than others. We will try to make all opportunities accessible to everyone and will provide training and support.

We hope to develop several roles that we would like to make available to members. These need to go through an approval process and may change slightly from the information shown below. Although we would like to make all of these available as soon as registration opens, we need to get them right - so they are of the most benefit to you, to the Association and to the wider MND community. We thank you for your patience while we continue working on some of these.

Research Advisory Network Roles

Research Advocate

We are currently working on how we might implement and support this role. It is currently in development and needs to pass through several stages of approval before it is available.

Research Advocates are the voice of the group. You will provide a connection between research and the wider MND community by:

  • helping to share news and updates
  • facilitating involvement of people living with and affected by MND from groups and communities less often seen or heard
  • learning to 'read between the headlines' to separate fact from fiction
  • debunking common myths and misconceptions
  • talking at events
  • running meetings
  • supporting new members

Research Information Reviewer

We are currently working on how we might implement and support this role. It is currently in development and needs to pass through several stages of approval before it is available.

Do you want to help us create relevant and useful research information for people with MND? Becoming a Research Information Reviewer is your chance to help create quality information for anyone who visits the research pages on our website. We want you tell us if our content is easy to understand, relevant, clear and to the point - and make suggestions on how it can be improved.

You will also help us identify gaps in our research information, suggest ways in which they could be filled and help develop the resources to do this. 

Lay Grant Reviewer

We are currently working on how we might implement and support this role. It is currently in development and needs to pass through several stages of approval before it is available.

Patient Involvement Advisor

We are currently working on how we might implement and support this role. It is currently in development and needs to pass through several stages of approval before it is available.

How do I join?

The CRAN is still in the planning stages. Please continue to visit this page for updates. Membership will open when planning is complete. Thank you for your patience.