Rare Disease Day 2023

Rare Disease Day is held on the last day of February every year. It’s a day that provides a focus on progressing advocacy work for rare diseases and working towards equity in access to diagnosis and treatments for people affected by a rare disease. This day is encouraging anyone affected by a rare disease to share their story online through social media or by talking with those around them.

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 sub-types, some of which are very rare.

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

• Grey zone lymphoma has features of two different types of lymphoma: classical Hodgkin lymphoma and diffuse large B-cell lymphoma. 
• Double-hit and triple-hit lymphoma have two or three genetic changes, and often start outside of lymph nodes.

One main challenge someone affected by a rare lymphoma might have is that there are fewer standard treatment options for rarer lymphomas. 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 that work.

We have a Rare Lymphomas Support Meeting running on 15 March, 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

Published: 28 February 2023