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 held on the third Wednesday of each month between 4pm and 5pm.

At these support meetings, you'll meet others with a lymphoma 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
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.

If you have Waldenstrom's macroglobulinaemia, which is not on this list, you are welcome to join one of our UK nations General Support Meetings instead. You might also be interested in joining a support meeting run by the specialist charity WMUK, which can be contacted through their website or by emailing to support@wmuk.org.uk.
If you have a cutaneous (skin) lymphoma, you are welcome to join our Cutaneous (Skin) Lymphomas support meetings instead.
Carers are not eligible to join this meeting; instead, you are welcome to join one of our Family, Friends and Carers Support Meetings or any of our UK nations General Support Meetings.

If this meeting isn't convenient for you, we also have a Rare Lymphomas support meeting on the second Wednesday of each month, at 7.30pm.

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. The facilitators will listen, seek to understand your experience and help address any questions or worries you have.

Support meetings are hosted on Zoom, last an hour and follow a common structure, including time for everyone to share your experience and feelings about life with lymphoma. You don't need a Zoom account or experience of using Zoom but will need access to an internet-enabled device.

To register for our support meetings, you need to be aged 18 or over, resident in the UK, and personally affected by lymphoma.

To see the full range of support meetings, please visit our Online Support Meetings page.