Rare Lymphomas Support Meeting
This support meeting is open to people with a diagnosis of one of the particularly rare lymphomas on the list below. Meetings are on the second Wednesday of each month, at 2pm.
Register for these meetings here
At these support meetings, you'll meet others with one of the very rare lymphomas that might be difficult to classify, not have a clear treatment pathway or be linked to an infection or treatment. It can be difficult to cope with the uncertainty surrounding rare lymphomas and it can be hard to find reliable information about very rare types.
You are welcome to join if you have one the lymphomas listed below.
- T-cell lymphomas
- Grey zone
- Double-hit and triple-hit
- High-grade B-cell, not otherwise specified (NOS)
- Primary effusion (PEL)
- Post-transplant lymphoproliferative disorder (PTLD)
- Primary central nervous system (CNS)
- Very rare forms of DLBC
If you aren't sure whether the type you have is very rare, please email us at services.managers@lymphoma-action.org.uk for more information.
- Waldenstrom's macroglobulinaemia is not on this list because, while it is rare, it is not one of the very rare types. If you have WM, you are welcome to join one of our other support meetings. If you are on active monitoring, one of our Active Monitoring support meetings will be more appropriate. If you are in partial remission following treatment, our Chronic Lymphomas support meeting or one of our general support meetings would be appropriate. You might also be interested in joining a support meeting run by the specialist charity WMUK - take a look at their website or email to support@wmuk.org.uk.
- If you have a cutaneous (skin) lymphoma, you are welcome to join our Cutaneous (Skin) Lymphomas support meetings, instead.
- If this meeting isn't convenient, you are welcome to join one of our specialised support meetings, depending on where you are on the lymphoma journey, or a general meeting. You can see our full range here Online Support Meetings. If you would like to discuss which meeting is best for you before registering, please do email us at services.managers@lymphoma-action.org.uk.
- Registration is for the service as a whole, so please submit only one registration form, joining whichever support meeting best suits your needs.
- Carers are not eligible to join these meetings. Instead, you are welcome to join a Family, Friends & Carers support meeting.
Our support meetings provide a safe, confidential place where people affected by lymphoma can talk to each other about their experience, express their thoughts and feelings, gain insight from connecting with others, and get support and information. They last an hour and follow a common structure. The facilitators will listen, seek to understand your experience and help address any questions or worries you have.
Support meetings are hosted on Zoom, but you don't need a Zoom account or experience of using Zoom. You will need access to an internet-enabled device with functioning microphone, speakers and camera.
To register for the support meeting service, you must be aged 18 or over, resident in the UK, and personally affected by lymphoma. For more information, please see our full Online Support Meetings Terms of Use.