We’re expanding our support — so no one is left out.
WMUK will formally extend its support services to include all people affected by all types of lymphoplasmacytic lymphoma (LPL) ensuring they have direct access to expert information, patient services and a supportive community.
LPL occurs when B-cells (a type of white blood cell) don’t develop properly and begin to grow in an uncontrolled way. These LPL cells can produce a paraprotein, which is an abnormal antibody. If the paraprotein is a type called IgM, the condition is usually diagnosed as Waldenstrom’s macroglobulinaemia (WM). If other types of paraprotein are found (most commonly IgG or IgA), or if no paraprotein is detected, the diagnosis is non-IgM LPL.
WM is the most common type of LPL, impacting around 19 out of 20 LPL patients. While there are differences in the conditions, the experiences, treatments, and day-to-day realities are very similar.
Until now, there has been no information or support aimed specifically at those living with non-IgM LPL. As a result, many have felt isolated and fallen through the cracks when it comes to accessing support.
In practice, WMUK has already been supporting people with a non-IgM LPL diagnosis for some time. However, this update will ensure that those living with non IgM-LPL can easily find, access, and benefit from WMUK’s services.
In addition, some people with WM are simply told that they have LPL. Therefore, by broadening our messaging we can ensure they find the right support even if they don’t have a precise diagnosis.
What’s changing?
- WMUK’s website, resources, and communications will now make explicit reference to LPL alongside WM.
- We’re tweaking our strapline to – Supporting people with a rare blood cancer – so it reflects the community we’re supporting.
- Dedicated information will be provided where experiences, treatment, or outcomes may differ for those with WM and non-IgM LPL.
- Patients, families, and healthcare professionals will continue to receive the same level of high-quality support – now broadened to ensure inclusivity.
Jane Nicholson, CEO of WMUK said:
“For too long, people diagnosed with LPL without WM have struggled to find clear, reliable support. We want to make sure anyone with an LPL diagnosis and their families can get the support they need to live well. This update simply reflects what has already been happening in practice, while making sure no one feels overlooked.”
Liz Came was diagnosed with LPL in 2024 and has already found reassurance in the WMUK community:
“I’ve found WMUK so helpful, especially the webinars that go into detail about B-cell biology, which really interests me. They don’t dumb things down, but explain in a way I can understand. More recently, I’ve joined the WMUK group for younger people, which has been very valuable. That gave me hope, and it also helped me realise how important it is to have information tailored to our subgroup.”
WMUK remains committed to supporting patients, families, and healthcare professionals through information, education, advocacy, and community connections. The change will strengthen WMUK’s position as a trusted, expert voice empowering people with WM and LPL to live well.
For more information, resources, and support, visit wmuk.org.uk.
About WMUK
WMUK is the only UK charity dedicated to supporting people living with Waldenstrom’s macroglobulinaemia (WM or IgM LPL) and non-IgM lymphoplasmacytic lymphoma. We provide trusted information, practical and emotional support, and advocate to help people with WM and LPL to live well.
For more information contact:
WMUK
