A group for anyone affected by prion disease in any way. A welcoming community where all experiences are respected and valued.
We are pleased to invite anyone who would like to join us in an online peer support meeting for anyone who has a connection to sporadic CJD. Our hope is that the peer support meeting provides an opportunity to listen, share, and connect with others. The group will be led by 1-2 members of our committee, most of whom have been personally affected by CJD in some way. Click HERE to register for the meeting. Below you will read more information on what to expect, from a previous online support group attendee, and our meeting ‘ground rules’. By registering, you are agreeing to follow these guidelines to help ensure a safe and respectful space for all.
Who this group is for
This group is open to anyone affected by CJD or another prion disease in any way. You might be bereaved, at risk, gene‑positive, caring for someone, or carrying more than one of these experiences. Everyone is welcome.
What the group offers
People affected by prion diseases often find that their experiences overlap in complex ways. This group brings together the wider community to share stories, listen to different perspectives, and support one another in a welcoming and inclusive space. If it feels right, this group can be split into smaller groups on the day.
What to expect
- A friendly, inclusive space
- Conversations reflecting a wide range of experiences
- Opportunities to learn from and support one another
- A focus on understanding, and community
- Respect for the different paths people are on
- No pressure to disclose personal medical information
- Usually, the National Coordinator from the CJD Support Network accompanied by one Trustee to welcome the group. They will have personal connections to prion disease.
- This group is about coming together, recognising shared humanity, and building supportive connections.
“There is an introduction about what the aim of the meeting is and how the group is a safe space. Whoever wants to can share their experiences of CJD and their stories. Everyone listens and then supports each other. Sometimes people bring up topics they want to talk about and a discussion can begin.”
What do I need to do to participate?
“Nothing, apart from an email address for the meeting link and mobile or computer. This is a group for anyone – you can just simply listen if you do not want to talk.”
Ground rules
To help ensure the groups are a safe space for everyone attending, we have set out some ground rules below that we would like to respectfully ask you to read through and be mindful of:
We share responsibility for making the group work, being mindful of taking care of ourselves and each other
We uphold confidentiality – what is said in the group is not repeated or discussed elsewhere
We are here to share our feelings and experiences; we try not to give advice unless someone asks
We respect and accept people, just as they are, and we avoid making judgements
We make space for everyone in the group to share, giving supportive attention to whoever is speaking
We understand that group members have the right not to share or answer questions if the prefer
We hope that the meeting is supportive but understand that such meetings can also be challenging, you are welcome to leave and re-enter the group at any time without explanation or judgement. If you need to, you can message the group leader directly using the ‘chat’ function, or you can contact the CJD Support Network at support@cjdsupport.co.uk.