Myeloma UK

Myeloma UK Welcome to the official Myeloma UK page. UK receives no Government funding and relies almost entirely on voluntary donations and fundraising.

Myeloma UK is the only organisation in the UK dealing exclusively with myeloma - our ultimate goal is to find a cure. We are dedicated to ensuring that patients get access to the right treatment at the right time, and to improving standards of treatment and care through research, education and awareness raising. Our organisation also provides a range of information and support services to patients, family and friends to help deal with a diagnosis of myeloma.

19/06/2026

Ann lives with myeloma and was diagnosed at the start of 2026. For Myeloma Awareness Week, she's sharing the myeloma warning signs she experienced. ⚠️

Ann is part of our Myeloma Voices partnership, and all experiences, thoughts and views are her own.

If you'd like to see more from Ann, you can find her on TikTok .multiple.myelo 🧡

18/06/2026

Kayleigh and Mart are helping us spread awareness this Myeloma Awareness Week. ⚠️

Mart has myeloma, and Kayleigh talks about the warning signs he experienced:

"Knowing what I know now of the symptoms of myeloma, would I have spotted Mart’s earlier?

We’re nearly 6 years on now and the reality is that his symptoms didn’t seem unusual at the time. Back pain and a drawn out cough, neither of those would make you think it’s a blood cancer.

It’s only now I know the symptoms the dots may have been easier to connect.

That’s why awareness matters. Myeloma symptoms can be easy to dismiss as something else, which is why knowing the warning signs is so important.

For Myeloma Awareness Week, please take a moment to learn the signs and share them with others."

Kayleigh and Mart are part of the Myeloma Voices partnership. All opinions, thoughts, and experiences are their own.

You can find Kayleigh and Mart on Instagram and TikTok at . 🧡

Could you spot the myeloma warning signs? ⚠️Despite being the third most common type of blood cancer, myeloma is frequen...
17/06/2026

Could you spot the myeloma warning signs? ⚠️

Despite being the third most common type of blood cancer, myeloma is frequently missed. The symptoms are vague and often linked to general ageing or minor conditions.

The most common symptoms are back pain, easily broken bones, fatigue, recurring infection, and pins and needles.

You know your body best, and when things aren't normal for you, it's time to get checked.

This Myeloma Awareness Week, help others spot the warning signs and share this post. 🧡

16/06/2026

Simone lives with myeloma and is helping us spread awareness this Myeloma Awareness Week. 🧡

Here's what she has to say:

"Bone pain, fatigue, frequent infections, frequent fractures. As this week is Myeloma Awareness Week, I wanted to make you aware of the key symptoms to look out for.

You might only be experiencing two or three of these symptoms, and it might not be myeloma. But you won't know unless you check. So speak to your GP. Early diagnosis can make a real difference!

This week, I'm also giving you homework. To pass it on!

Tell your families, tell a friend to tell a friend. Book a skywriting plane, if that's still a thing!"

Simone is part of our Myeloma Voices partnership. All opinions, thoughts, and experiences are her own.

If you'd like to follow her, you'll find her on 👇

YouTube:
Instagram:
TikTok:

15/06/2026

Many people living with myeloma experience symptoms for months or even years before receiving a diagnosis.

Fatigue that won't go away, recurring infections, and unexplained pain are just a few of the warning signs that are often overlooked. ⚠️

This , you can help us change that.

By sharing this post, you can help raise awareness and ensure more people recognise warning signs sooner.

Keep your eyes peeled this week for more ways to get involved and to help us make the warning signs of myeloma impossible to ignore.

Monday is officially the start of Myeloma Awareness Week 2026! This year, we are bringing back our award-winning 'Know t...
12/06/2026

Monday is officially the start of Myeloma Awareness Week 2026!

This year, we are bringing back our award-winning 'Know the Warning Signs' campaign, and there are plenty of ways for you to get involved.

Throughout the week, you’ll find us at locations across the UK — including Silverburn Shopping Centre in Glasgow from Monday to Wednesday, Festival Place Shopping Centre in Basingstoke on Thursday, and at Windrush Day on Saturday afternoon.

We’ll also have billboards on display in various locations nationwide. If you spot one, take a picture and let us know!

Our supporter packs have now been sent out and are ready to use as awareness-raising tools in your communities. You can also support the campaign by sharing our social media content to help spread the word.

As part of this year’s activity, we’re introducing new “Myeloma Voices,” real people from the myeloma community sharing their warning signs and personal journeys, helping to bring these important messages to life.

Keep your eyes peeled, get involved, together we will make the warning signs of myeloma impossible to ignore. 🧡

Read more about our campaign here: https://brnw.ch/21x3igg

Some more exciting news to share with you all this afternoon: the ground-breaking treatment, talquetamab (Talvey®) has b...
08/06/2026

Some more exciting news to share with you all this afternoon: the ground-breaking treatment, talquetamab (Talvey®) has been approved for use on the NHS in Scotland.

The drug is aimed at people whose cancer has come back at least three times and whose previous treatments include an immunomodulatory agent such as lenalidomide (Revlimid®), a proteosome inhibitor such as bortezomib (Velcade®) and an anti-CD38 antibody like daratumumab (Darzalex®).

Following an approval from NICE in November in England and Wales, we are delighted that patients in Scotland can now benefit from this treatment too.

🔗Read more here: https://brnw.ch/21x3aYt

We're delighted to share that following a draft no decision, NICE have approved the life-extending treatment, DVRD, for ...
08/06/2026

We're delighted to share that following a draft no decision, NICE have approved the life-extending treatment, DVRD, for use on the NHS in England and Wales.

We submitted more data and evidence to NICE’s appraisal committee and, along with clinicians and the pharmaceutical company behind the treatment, successfully made the case for DVRD to be rolled out on the NHS.

DVRD is aimed at newly-diagnosed patients who are not eligible for a stem cell transplant. It combines daratumumab (Darzalex®), bortezomib (Velcade®), lenalidomide (Revlimid®) and dexamethasone.

The latest trial data shows that 68% of people on DVRD were still in remission after four and a half years.

Caroline Donoghue, our Access Manager, said:

“This is fantastic news and a great result for patients who felt let down by NICE’s initial decision not to approve DVRD. We have been working very hard to get NICE to reconsider and we’re delighted they’ve agreed to roll it out on the NHS. We know how devastating being diagnosed with myeloma is and new patients deserve the best possible treatment right from the off.

Not only does DVRD have the potential to keep myeloma at bay for more than four years, but it means less time spent in hospital for people with myeloma and their families. We can’t emphasise enough what this means for their quality of life."

🔗Read more about DVRD here: https://brnw.ch/21x3aEv

Congratulations to our latest highlighted volunteer, Rachel! Rachel was diagnosed with myeloma 14 years ago, in 2012 and...
06/06/2026

Congratulations to our latest highlighted volunteer, Rachel!

Rachel was diagnosed with myeloma 14 years ago, in 2012 and has since been volunteering with us as a member of the Patient & Carer Research Panel. Rachel also decided to train as a Peer Buddy in 2022 and has supported over 20 people so far. 🧡

Not only that, but Rachel has also helped create a packing list that all Peer Buddies can use and add to as a resource for supported people going into the hospital for Stem Cell Transplants. One example is suggesting that patients pack an extra-long charging lead for their devices in case their bed is far from a plug.

Speaking about her experiences, she said:

“I’m extremely glad to be able to give something back to an organisation that has been such a great source of reliable information, empathetic help and for the campaigning they do on behalf of us all to bring about access to new drugs. As a result of new treatments, I’ve recently been able to meet my twin grandchildren and hope to see them grow up. After taking early retirement from work, the Peer Buddy volunteer role fills a gap. I would thoroughly recommend volunteering with Myeloma UK.”

To find out more about volunteering with Myeloma UK, please email [email protected]. 📧

Read more about Rachel here: https://brnw.ch/21x38Qq

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