29 February is RARE DISEASE DAY

Rare Disease Day is held on the last day of February every year. It’s a day that provides a focus on raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.

Although lymphoma is the 5th most common cancer in the UK, there are some rare types. Some people might know what ‘lymphoma’ is when they are diagnosed, but others have never heard of it before. Lymphoma is split into two groups: Hodgkin lymphoma and non-Hodgkin lymphoma. Under these two main types of lymphoma, there are over 60 different types, some of which are very rare.

Rare lymphomas are often difficult to classify and diagnose. For example:

• Grey zone lymphoma
• Double-hit and triple-hit lymphoma
• High-grade B-cell, not otherwise specified (NOS)
• T-cell lymphomas
• Primary effusion lymphoma (PEL)
• Primary central nervous system lymphoma (CNS)
• Post-transplant lymphoproliferative disorder (PTLD)

One main challenge someone affected by a rare lymphoma might have is that there are fewer standard treatment options. This means they can be difficult to treat. Clinical trials might be an option for a rare lymphoma because scientists are always trying to find new treatments.

We have Rare Lymphomas virtual support meetings running on Wednesday 13 March at 7.30pm and on Wednesday 20 March at 4pm, where you can meet other people affected by a rare lymphoma.

If you have a rare lymphoma and would like to share your story, get in touch by emailing publications@lymphoma-action.org.uk.