A warm, supportive group for for anyone who has a connection to iatrogenic/acquired prion disease. A space to talk openly, share experiences, and feel less alone.
We are pleased to invite anyone who would like to join us in an online peer support meeting. 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. You can select any dates you would like to attend. You can also book for each 2026 session individually closer to the date as suits you. There will be a link in your confirmation email to click to make any changes.
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 is this group for?
This group is for anyone who has a connection to genetic or iatrogenic/acquired prion disease. This might mean people who are at risk of developing a prion disease whether through genetics or potential past exposure. It includes people who are unsure of their risk, those who are, those living with both risk and bereavement and anyone supporting them.
What does the group offer?
Living with uncertainty can be emotionally demanding. Many people carry their worries quietly. This group offers a warm, nonjudgmental space to talk openly with people who understand what it’s like to live with questions about the future.
What to expect at the meeting?
- A calm, respectful environment
- Conversations about coping with uncertainty or certainty
- Space to explore feelings around risk, testing, potential loss, family communication and more
- Support from others who share similar concerns
- 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 is a peer‑support space, not a medical or genetic counselling service. The focus is on connection, understanding, and mutual support.
“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.