Myeloma UK invests in innovative, life-changing research, advocates for patients to get access to new treatments on the NHS and provides free information and support services to patients and their families.
We are funded almost entirely by supporters like you – thank you!
Myeloma UK was established in 1997 to change the lives of patients with myeloma and related conditions and realise our ambition of making myeloma history.
Myeloma is a very individual blood cancer, and every patient’s experience is different.
When we first started our work
The average length of time a patient with myeloma could expect to survive was between 12 and 24 months.
Today, that time has quadrupled to between four to eight years, with three out of ten patients living for ten years or more after their diagnosis – and some for much longer still.
There were no bespoke myeloma treatments available to patients via the NHS.
Today, we have eight myeloma drugs in active use in the NHS pathway that can be delivered in 12 different combinations throughout a patient’s treatment journey.
Your support makes a real difference
Thanks to you, we have achieved so much already in 2023. Here are just a few highlights:
- We won our #UnlockDaraCyBord appeal which asked NICE to review its decision to reject the first AL amyloidosis treatment
- We continued work on our Unmet Need research project looking at the new and emerging needs of people living with myeloma
- We launched a new website focused on making it easier for you to find the information you need when you need it and improving accessibility
Hear more from our CEO, Sophie on the amazing things we’ve achieved in 2023:
Investing in life-changing research
Thanks to your support, we can invest in pioneering research, like the MUK nine/OPTIMUM Clinical Trial.
The David Forbes-Nixon Foundation is supporting Myeloma UK through the Jaquelin Forbes-Nixon Research Fellowship which helps to fund one of the lead investigators, Dr Martin Kaiser, at the Institute of Cancer Research (ICR). The trial is exploring how to improve treatment for patients with the most aggressive, high-risk forms of myeloma. The results so far are extremely promising, and Dr Kaiser hopes that NHS will consider the data as soon as possible.
“To work together with Myeloma UK on research is fantastic.
It is a patient-centric charity, which means that these projects, which are really aiming to benefit patients are particularly prioritised, and I think we are really seeing the results of that coming through.”Dr Martin Kaiser
Fighting for patients to get access to new treatments
We recently won our #UnlockDaraCyBorD appeal, which asked the National Institute for Health and Care Excellence (NICE) to review its decision to reject the first AL amyloidosis treatment. NICE’s appraisal committee will now have to reconvene and review all the evidence before making a new decision.
“For years patients had been telling us how hopeless they felt knowing that they’d been diagnosed with a condition which had no dedicated treatment option. We are now more determined than ever to get it approved in the rest of the UK and offer newly diagnosed AL amyloidosis patients everywhere access to this life-changing treatment.”Myeloma UK Director of Research and Patient Advocacy, Shelagh McKinlay
We will keep fighting to ensure every patient across the UK gets access to the latest, most effective treatment, regardless of where they live.
Providing free information and support services
Last year alone, we answered 2,178 calls to our freephone Myeloma Infoline and replied to 937 emails from our Ask the Nurse email service, ensuring no one has to face myeloma alone. Our dedicated team of Myeloma Information Specialists provide information about myeloma and its treatments, practical advice and emotional support.
Thanks to you, these services are freely available, providing a lifeline for people affected by myeloma.
“I am very grateful for your professional support and advice. It’s a relief to be able to get in touch.”Myeloma Infoline user
“Together, with your support, we’ve achieved all of this and more.
Myeloma UK receives no Government funding – our work is powered by your generous donations and fundraising.
Thank you so much for your support – together we are working with myeloma patients to create an empowered present and a hopeful future.”Sophie Castell, CEO Myeloma UK
Other ways you can get involved and make a difference
Donate and help fund our vital work
Whether you choose to make a one-off donation or give regularly, your gift will help to make sure no one faces myeloma alone.