The UK charity for WM & LPL – a rare type of blood cancer

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WMUK's History

Founded in 2012 by a small group of dedicated volunteers, WMUK has evolved to become the UK’s only charity dedicated to people living with Waldenström’s macroglobulinaemia and lymphoplasmacytic lymphoma.

In little more than a decade, we have established world-first services, shaped national policy, and built a community where no one faces this rare and complex condition alone. From launching the world’s first nurse-led WM Support Line to presenting patient research at the House of Lords, every milestone on this page has been driven by one thing: the voices, experiences and needs of the WM Community we exist to serve.

Every step forward has been taken together

2012
Year
2012
2012
WMUK is founded
WMUK is founded by a dedicated group of volunteers determined to support people affected by Waldenstrom’s macroglobulinaemia (WM), a rare and incurable form of blood cancer. From the outset, the charity is driven by the needs and voices of the patient community.
2016
2016
The Rory Morrison WMUK Registry is established
The Rory Morrison WMUK Registry is established in memory of Rory Morrison, who was diagnosed with WM at just 39. Following his death, the Registry is created in his honour to bring vital patient data together in one place, accelerating research and improving understanding of this rare condition.
2019
2019
WMUK becomes a registered charity
WMUK gains official charity status and recruits its first paid member of staff. Becoming a registered charity enables WMUK to expand its reach, support more patients nationwide, and build stronger partnerships with healthcare professionals to deliver lasting change.
2020
2020
First professional website launched
The first WMUK professional website is launched, providing trusted, accessible and condition-specific information for people living with WM and their families.
First patient webinars launched
WMUK launches its first patient webinars. The inaugural webinar, delivered in partnership with Lymphoma Action during the COVID-19 pandemic, addresses urgent patient needs. Since then, WMUK’s digital webinars have been viewed more than 30,000 times, extending support to across the UK and even further.
2021
2021
First national patient survey
WMUK engages the community in the first national patient survey, to ensure the voices of patients remain at the heart of decisions making. Insights highlight gaps in services and barriers to accessing care, which are used to shape support and services WMUK provides around the needs of patients.
2022
2022
World's first nurse-led WM Support Line launched
WMUK launches the world’s first nurse-led WM Support Line. Each year the WM Support Line helps more than 280 patients and their loved ones navigate diagnosis, treatment decisions and ongoing care with greater confidence.
World first
2023
2023
First European WM Patient Forum co-hosted
WMUK co-hosts the first European WM Patient Forum, bringing together more than 200 patients and family members in person and online, strengthening international collaboration and peer support.
European first
Patient Advisory Group established
A Patient Advisory Group of 17 people living with WM is established, ensuring that all WMUK services and strategic decisions are guided by lived experience.
Wheels for Waldenström's
Healthcare professionals, patients and their wider networks united for Wheels for Waldenstrom’s. The three-day London to Paris cycle ride raises more than £56,000 for WMUK.
2024
2024
UK's first guide for newly diagnosed WM patients published
The UK’s first guide for people newly diagnosed with WM is published, improving awareness among both patients and healthcare professionals and helping individuals access the right support earlier.
UK first
Big WM Survey
More than 370 patients share what it’s really like to live with WM through ‘Big WM Survey’. Insights are used inform discussions with policy makers and shape services to help reduce inequality in care for those with rare cancers.
PIF TICK accreditation awarded
WMUK is awarded PIF TICK accreditation, the recognised UK quality mark for trustworthy health information. WMUK is the only charity dedicated to WM and LPL to achieve this recognition.
Active Monitoring Checklist launched
WMUK launch the Active Monitoring Checklist. Many living with WM will spend months or years on active monitoring before treatment begins. This tool, developed in partnership with healthcare professionals and patients, helps guide conversations during clinical appointments, so ensure patients can access the support they need at the right time.
UK's first WM Clinical Trials Hub launched
WMUK launches the UK’s first WM Clinical Trials Hub, helping patients and clinicians identify relevant research opportunities and improving access to potentially life-changing treatments.
UK first
2025
2025
Active Monitoring Checklist gains international recognition
The Active Monitoring Checklist gains national and international recognition, being shared at both the British Society for Haematology and American Society for Haematology conferences, demonstrating its potential to improve patient experience across other conditions.
First Related Conditions Guide published
WMUK publishes the first Related Conditions Guide, providing clear, accurate information on symptoms and associated conditions affecting people with WM and LPL.
National Cancer Plan representation
WMUK collaborates with Blood Cancer Alliance and Cancer52, ensuring that the needs of people with rare blood cancers are represented in shaping the National Cancer Plan.
Active Monitoring Checklist presented at House of Lords
WMUK presents the Active Monitoring Checklist to policy makers at the House of Lords, amplifying the voices of the WM community reducing inequality in rare cancer care”.
National WM Buddy Service launched
A national WM Buddy Service is launched, connecting patients with trained peer supporters who share similar experiences, reducing isolation and improving wellbeing.
Regional Patient Summits across the UK
WMUK hosts Regional Patient Summits in England, Northern Ireland, Scotland and Wales. The events take expert knowledge directly to patients, and brings together communities of patients, healthcare professionals and support organisations to improve knowledge, confidence and quality of life.
2026
2026
Support extended to everyone affected by LPL
WMUK formally extends support to everyone affected by lymphoplasmacytic lymphoma (LPL), broadening its impact to reach more people living with related rare conditions.
World's first accredited WM learning modules for healthcare professionals
WMUK launches the world’s first accredited WM learning modules for healthcare professionals, developed in collaboration with Guy’s Cancer Academy to improve clinical knowledge and ultimately patient outcomes.
World first