Disclaimer: Whilst we always aim to provide accurate information, Recite Me uses machine translation so the translation may not be perfect and we can’t guarantee its accuracy. Myeloma UK accepts no liability for any inaccuracies resulting from the use of this translation tool. The information provided is not meant to replace the advice of your healthcare team. Find out more about this tool at reciteme.com

Transforming lives together

Since 1997, our supporters have helped transform the lives of the myeloma community. You’ve been at the heart of every achievement listed here. We can never thank you enough.

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2022

 

Treatments
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Treatments

Breakthrough for AL amyloidosis patients

After ongoing advocacy from the Myeloma UK team, the Scottish Medicines Consortium approves the first treatment for AL amyloidosis – a true milestone moment.

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Treatments
2022

Breakthrough for AL amyloidosis patients

After ongoing advocacy from the Myeloma UK team, the Scottish Medicines Consortium approves the first treatment for AL amyloidosis – a true milestone moment.

Until this point, patients have to rely on treatments for other conditions. But an innovative combination of four drugs now means they can benefit from a tailored, targeted approach.

It’s a big step forward, but we will keep fighting to make sure patients across the UK can always access the latest, most effective treatment – wherever they are.

Find out more
Diagnosis
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Diagnosis

Exposing the true cost of delayed diagnosis

Our Life Worth Living report lays bare the impact of waiting for diagnosis – as we campaign for a greater focus on patients’ quality of life.

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Diagnosis
2022

Exposing the true cost of delayed diagnosis

Our Life Worth Living report lays bare the impact of waiting for diagnosis – as we campaign for a greater focus on patients’ quality of life.

We survey 1300 myeloma patients and carers. It’s clear that patients who wait months before myeloma is identified are more likely to experience issues like weakened bones, spinal fractures and kidney damage – and so face a greater struggle to live life to the fullest.

Using the findings, we call for patients’ quality of life to be put at the heart of all decisions about myeloma treatment and care – from commissioning research to improving clinical practice.

Find out more
Research
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Research

ProMMise of a treatment revolution

ProMMise becomes the first clinical trial developed through our CARP initiative to recruit patients – who are given earlier access to a new drug, belantamab mafodotin.

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Research
2022

ProMMise of a treatment revolution

ProMMise becomes the first clinical trial developed through our CARP initiative to recruit patients – who are given earlier access to a new drug, belantamab mafodotin.

It’s one of the first myeloma trials in the UK that involves researchers testing multiple treatment combinations at the same time. And it means patients whose myeloma has come back can access a new class of drug when existing treatments no longer work.

It’s the latest example of how, with supporters, we are transforming lives together. Thank you for being part of the unstoppable Myeloma UK community.

Find out more
2021

 

Diagnosis
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Diagnosis

‘Don’t miss myeloma’ – our campaign for GPs

With 1 in 4 myeloma patients waiting over ten months to get a diagnosis, we increase awareness among healthcare professionals during Blood Cancer Awareness Month.

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Diagnosis
2021

‘Don’t miss myeloma’ – our campaign for GPs

With 1 in 4 myeloma patients waiting over ten months to get a diagnosis, we increase awareness among healthcare professionals during Blood Cancer Awareness Month.

To drive home our message – ‘don’t miss myeloma’ – we share our GP guide to myeloma and MGUS far and wide. It contains vital information on spotting warning signs and interpreting test results, so GPs consider myeloma earlier and know how to respond.

Find out more
Research
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Research

Revealing new insights hidden in patient data

We launch the Myeloma Data Collaboration to help connect and compare patient data across NHS trusts – a vital step in the hunt for better treatments.

Treatments
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Treatments

Maintenance treatment approved (we don’t take no for an answer pt 3)

A huge victory for patient power as NICE approves lenalidomide (Revlimid®) maintenance after an initial rejection. It’s the first life-extending maintenance treatment for myeloma.

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Treatments
2021

Maintenance treatment approved (we don’t take no for an answer pt 3)

A huge victory for patient power as NICE approves lenalidomide (Revlimid®) maintenance after an initial rejection. It’s the first life-extending maintenance treatment for myeloma.

Following the rejection, we survey 1,000 patients and share their insights on how this treatment can transform lives. We also bring together clinicians at Bristol Myers Squibb – the company that produces the treatment, to strengthen the case for lenalidomide maintenance. The pressure tells, and the approval decision follows.

As haematologist Professor Graham Jackson says at the time: “Lenalidomide maintenance is a vital part of treatment for patients who have had a stem cell transplant.”

Find out more
Diagnosis
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Diagnosis

Transforming early diagnosis research

With limited investment in studies designed to help identify myeloma sooner, we respond – and launch our own Early Diagnosis Research Programme.

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Diagnosis
2021

Transforming early diagnosis research

With limited investment in studies designed to help identify myeloma sooner, we respond – and launch our own Early Diagnosis Research Programme.

The longer myeloma goes undetected, the harder it gets to treat and the more likely it is to affect people’s day to day lives. But 1 in 3 patients are diagnosed through as emergency route, so we urgently need to increase our knowledge.

That’s our objective for the Early Diagnosis Research Programme. Our first funded projects which explore myeloma screening and potential ways to slow down or prevent myeloma were launched in 2022.

Find out more
2020

 

Treatments
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Treatments

The Advocacy Partner Panel – how patients get heard

Our advocacy is always based on listening to patients. To make the patient voice even louder we launch the Advocacy Partner Panel making it easier for patients to share experiences and insights.

Patient experience
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Patient experience

COVID-19 – at the centre of the myeloma community

From the beginning of the pandemic, we’re the hub for patients – discovering how myeloma patients are affected and sharing advice and support.

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Patient experience
2020

COVID-19 – at the centre of the myeloma community

From the beginning of the pandemic, we’re the hub for patients – discovering how myeloma patients are affected and sharing advice and support.

Calls to our Infoline increased by 249% at the start of the pandemic, and our COVID-19 information hub is viewed over 66,000 times. More than 1,700 patients share their experiences with us, guiding our work with policymakers to ensure that myeloma isn’t ignored.

The pandemic is a challenging time for myeloma patients and their families – but we do everything possible to reduce its impact and help everyone affected by myeloma keep living life to the fullest.

Visit the COVID hub
Fundraising
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Fundraising

Our amazing supporters embrace new ways to raise funds

The myeloma community’s unwavering support during the pandemic blows us away. Close to 300 supporters sign-up to our first ever virtual events and find inventive ways to raise over £91,000.

Treatments
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Treatments

Advocacy in action: isatuximab approved

Another win in our campaigning for new treatments, as NICE approves isatuximab for myeloma patients who have relapsed three times.

2019

 

Research
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Research

CARP – a new era for myeloma clinical trials

We pave the way for better, kinder myeloma treatments by launching the Concept and Access Research Programme (CARP) at the University of Leeds.

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Research
2019

CARP – a new era for myeloma clinical trials

We pave the way for better, kinder myeloma treatments by launching the Concept and Access Research Programme (CARP) at the University of Leeds.

It’s the only programme in the UK focused on developing early-phase myeloma clinical trials. We bring together experts from the university’s clinical trials unit with myeloma clinicians through CARP. Together they develop innovative clinical trials based on what we hear from patients.

Many myeloma patients will access new treatments thanks to CARP, including one trial that launches a pioneering 3-in-1 treatment.

Find out more
Fundraising
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Fundraising

Our 1,000th lottery winner

50p from every £1 ticket in our weekly lottery goes straight to support our work – and in 2019 we celebrate with our 1,000th winner!

2018

 

Patient experience
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Patient experience

Easy-to-read guides to empower more patients

We launch a range of easy-to-read guides about myeloma, designed for people with learning disabilities and anyone who struggles to read written English.

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Patient experience
2018

Easy-to-read guides to empower more patients

We launch a range of easy-to-read guides about myeloma, designed for people with learning disabilities and anyone who struggles to read written English.

The feedback is positive from the start. “I like the design, which is great for reading together with a carer, and which focuses on each message individually, so people can take it one step at a time.”

Download the guides
Treatments
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Treatments

Daratumumab approved – because patients are heard

The first immunotherapy drug targeting myeloma cells is made available – and patients play a big role by sharing their experiences.

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Treatments
2018

Daratumumab approved – because patients are heard

The first immunotherapy drug targeting myeloma cells is made available – and patients play a big role by sharing their experiences.

We work with NICE, Janssen (which produces the drug – daratumumab (Darzalex®)) and doctors to make sure decision-makers hear directly from patients. We submit written evidence, and patients and doctors join us at NICE meetings to explain how the drug would improve lives. And when the drug is approved, it’s a major source of celebration.

We are hugely grateful for everyone who shares their experiences – patients, carers, and family members. Together, you are shaping a better future for people with myeloma.

Find out more
Research
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Research

Understanding what matters most to patients

475 myeloma patients join our study to understand which factors matter most when choosing treatment. The results still inform our advocacy for treatments today.

2017

 

Research
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Research

Cutting-edge research for high-risk patients

We launch MUK nine, a new trial using state-of-the-art genetic techniques to try and identify the best treatment options for high-risk patients.

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Research
2017

Cutting-edge research for high-risk patients

We launch MUK nine, a new trial using state-of-the-art genetic techniques to try and identify the best treatment options for high-risk patients.

It’s one of the first international trials focused on patients in most urgent need. We help to recruit participants across the UK. Dr Martin Kaiser, Chief Investigator and Senior Researcher at The Institute of Cancer Research, explains our ambitions:

“The MUK nine trial will give patients access to innovative treatments and state-of-the-art molecular testing. We hope MUK nine will transform treatment from a one-size-fits-all approach to a stratified approach driven by disease characteristics.”

Treatments
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Treatments

Advocacy in action: pomalidomide

We successfully campaign for a new drug – pomalidomide (Imnovid®) – to be introduced on the NHS for patients whose myeloma has come back three times or more.

Research
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Research

Can viruses treat myeloma?

We’re at the heart of another pioneering trial, known as MUK eleven. It studies cancer-killing viruses and helps paves the way for new biological treatments.

Diagnosis
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Diagnosis

Breaking down barriers to early diagnosis

The average time to diagnose myeloma is longer than almost every other cancer. We launch our Early Diagnosis Programme and Steering Committee to change that.

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Diagnosis
2017

Breaking down barriers to early diagnosis

The average time to diagnose myeloma is longer than almost every other cancer. We launch our Early Diagnosis Programme and Steering Committee to change that.

In the years that follow, we work to improve best practice in labs. We increase awareness of MGUS – a benign condition that can sometimes lead to myeloma. We develop the first guide to myeloma for GPs and a range of online modules. And we partner with BMJ learning, Gateway C and Macmillan to get our resources into the hands of as many GPs as possible.

Find out more
Treatments
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Treatments

Advocacy in action: carfilzomib approved

Carfilzomib (Kyprolis®) becomes the latest drug to be approved after we push for it to be made available. It’s used for patients whose myeloma has returned.

Treatments
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Treatments

Advocacy in action: ixazomib approved

In another victory for advocacy, ixazomib (Ninlaro®) is approved for patients whose myeloma returns twice. As ever, we show the difference it will make to patients.

2016

 

Research
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Research

More research revelations – genetics and myeloma

Our scientists discover that the inherited risk of developing myeloma is related to 17 genetic variants. The more we understand the causes, the more we can improve treatments.

Fundraising
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Fundraising

A London to Paris bike ride like no other

We hold our first London to Paris cycle ride, and 125 riders raise an amazing £446,703. The biggest highlight? The unforgettable sense of community.

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Fundraising
2016

A London to Paris bike ride like no other

We hold our first London to Paris cycle ride, and 125 riders raise an amazing £446,703. The biggest highlight? The unforgettable sense of community.

Patients, their friends and family, haematologists, clinical nurse specialists, pharmaceutical company staff and Myeloma UK employees all take to the saddle, united by a shared determination to improve patients’ lives.

We’ve held the ride every year since – digitally in 2020 and 2021 because of the pandemic – and together, 600 amazing cyclists have raised over £1.7 million. Chapeau!

Find out more
Treatments
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Treatments

Celebrating the approval of another anti-myeloma drug

We work with partners across the myeloma community to successfully push for panobinostat to be approved. Hundreds of people have benefitted in the years since.

Research
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Research

Revealing the impact of being a carer

Our ‘Life in Limbo’ research gives an unprecedented insight into the difference carers make to myeloma patients – and the pressures they face.

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Research
2016

Revealing the impact of being a carer

Our ‘Life in Limbo’ research gives an unprecedented insight into the difference carers make to myeloma patients – and the pressures they face.

We find that while relatives and friends often play a central role in looking after loved ones, 74% don’t see themselves as carers. As one person says: “Sometimes it’s tiring. Sometimes I feel sad… But it’s all the price of love.”

The research provides the first clear evidence of how myeloma affects the people close to the patient. It’s since been used in all appraisals of new drugs to show how new treatments could benefit patients and carers.

Read the report
Patient experience
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Patient experience

Launching a new Infopack for carers

Hot on the heels of our carer research, we produce new support and information for carers – based on what carers tell us they need most.

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Patient experience
2016

Launching a new Infopack for carers

Hot on the heels of our carer research, we produce new support and information for carers – based on what carers tell us they need most.

The Infopack explores what a carer is, how caring can affect your life and how you can take care of yourself as a carer. The feedback is fantastic. We’re over the moon to receive comments like this:

“I think what Myeloma UK does really well is it comes across as inclusive. It’s an acknowledgment that… just because we don’t have the illness doesn’t mean our lives are not just as much turned upside down.”

Find out more
Patient experience
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Patient experience

Making sure our information is led by patients

Our new Patient Information Panel brings together patients, carers, family and friends. They help produce our information and point out topics we need to cover.

2015

 

Research
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Research

Putting patients at the heart of research

We launch the Patient and Carer Research Panel so more people can help shape life-changing research. Members have since reviewed over 25 research projects.

Patient experience
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Patient experience

Rewarding hospitals that provide exceptional care

Our Clinical Service Excellence Programme (CSEP) launches. It recognises hospitals leading the way in myeloma care and helps to raise standards of care nationwide.

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Patient experience
2015

Rewarding hospitals that provide exceptional care

Our Clinical Service Excellence Programme (CSEP) launches. It recognises hospitals leading the way in myeloma care and helps to raise standards of care nationwide.

Myeloma patients are at the heart of CSEP, completing surveys that cover every stage of their experiences.

In the years after its launch, CSEP awards have become highly sought after. 44 hospitals have now gained CSEP accreditation.

Find out more
Research
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Research

Putting quality of life in the spotlight

We create the Myeloma Palliative Care Outcome Scale, or MyPOS, to measure patients’ quality of life. It lets doctors assess the impact of myeloma and give patients the right support.

2014

 

Patient experience
Icon for category type Patient experience
Patient experience

Our first publication written entirely by patients and carers

We launch ‘The small things that make all the difference’. It’s packed with tips, stories and reflections by and for people affected by myeloma.

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Patient experience
2014

Our first publication written entirely by patients and carers

We launch ‘The small things that make all the difference’. It’s packed with tips, stories and reflections by and for people affected by myeloma.

We’re proud to be at the heart of the myeloma community and to put patients first in everything we do. The booklet has now been downloaded or sent to people hundreds of times – and we know it creates hope.

As one person told us: “It’s a fantastic little read. It makes you know you ain’t alone.”

Download the book
2013

 

Patient experience
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Patient experience

The children’s book that brings myeloma to life

We work in all kinds of ways to raise awareness of myeloma, including publishing a book – Kelsey and the Yellow Kite – to help children understand.

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Patient experience
2013

The children’s book that brings myeloma to life

We work in all kinds of ways to raise awareness of myeloma, including publishing a book – Kelsey and the Yellow Kite – to help children understand.

Real-life hero Kelsey inspires the story. She was seven when her dad died of myeloma. Kelsey’s family went to incredible lengths to raise over £13,000 for our work.

Kelsey and the Yellow Kite contains beautiful illustrations and explanations of things like myeloma and stem cell transplants. The British Medical Association highly commended it.

Download the book
Research
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Research

Trialling a new combination of myeloma drugs

Working with partners, we support MUK five – a trial that shows combining carfilzomib, cyclophosphamide and dexamethasone can help stop myeloma coming back after treatment.

2012

 

Patient experience
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Patient experience

Our 100th Patient and Family Infoday

Fifteen years after the first event in Edinburgh we hold our 100th Infoday. Giving people the chance to learn more about myeloma from peers and medical professionals.

2011

 

Research
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Research

Breakthrough for genetics and myeloma

Just three years after we set up our Translational Research Programme, our team of scientists finds genetic variations linked to a higher risk of myeloma.

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Research
2011

Breakthrough for genetics and myeloma

Just three years after we set up our Translational Research Programme, our team of scientists finds genetic variations linked to a higher risk of myeloma.

It’s a major moment – the first time research has shown that link. Armed with that knowledge, our researchers continue to hunt for clues that could explain how myeloma develops and lead to better treatments.

Find out more
Fundraising
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Fundraising

Giving hope through gifts in Wills

Our total income from legacies reaches £1 million. Gifts in Wills allow us to invest in groundbreaking research, bringing hope to patients and families.

2010

 

Diagnosis
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Diagnosis

Reaching 6,500 GPs – with help from patients

When GPs recognise myeloma, it can transform patients’ futures. So we launch the TAKE2 campaign to build awareness of signs, symptoms and how to respond.

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Diagnosis
2010

Reaching 6,500 GPs – with help from patients

When GPs recognise myeloma, it can transform patients’ futures. So we launch the TAKE2 campaign to build awareness of signs, symptoms and how to respond.

Almost nine in ten patients survive for a year or more when a GP diagnoses myeloma. But if it’s diagnosed once a patient needs emergency help, that number drops to six in ten. That’s why GPs are always key to our plans.

In 2010, we ran the TAKE2 campaign to get our one-page ‘diagnosis pathway’ resource into GPs’ hands. Patients help deliver thousands of copies, and 80 MPs back the campaign too.

Patient experience
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Patient experience

Helping patients manage life with myeloma

Keeping track of symptoms and side effects is important. We launch our downloadable patient diary, where patients can record everything from test results to their thoughts and feelings.

2009

 

Treatments
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Treatments

Lenalidomide approved (We don’t take no for an answer pt 2)

Myeloma drug lenalidomide (Revlimid ®) is rejected for use in England and Wales. So for the second time in two years, we fight back – and win.

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Treatments
2009

Lenalidomide approved (We don’t take no for an answer pt 2)

Myeloma drug lenalidomide (Revlimid ®) is rejected for use in England and Wales. So for the second time in two years, we fight back – and win.

Patients in clinical trials have told us about the huge difference lenalidomide makes, but NICE – which approves or rejects treatments in England and Wales – said it wasn’t cost-effective. We lobby the drug manufacturer to keep talking to NICE, and they agree on a new pricing deal that keeps everyone happy.

Lenalidomide is approved – and two years later, it’s approved in Scotland too. It continues to improve patients’ lives to this day.

Research
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Research

Speeding up clinical trials by bringing everyone together

We launch the Clinical Trial Network, a groundbreaking collaboration between patients, doctors, researchers, drug companies and the NHS to help patients get new treatments sooner.

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Research
2009

Speeding up clinical trials by bringing everyone together

We launch the Clinical Trial Network, a groundbreaking collaboration between patients, doctors, researchers, drug companies and the NHS to help patients get new treatments sooner.

Clinical trials are crucial for myeloma patients. They build our understanding of myeloma and lead the way to more effective treatments. So we bring the myeloma community together to form the Clinical Trial Network.

It leads to 10 new clinical trials – giving around 1,200 patients across more than 40 hospitals access to promising new treatments.

Find out more
Diagnosis
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Diagnosis

Helping doctors diagnose MGUS and smouldering myeloma

We provide funding and support that leads to the first guidelines on recognising and treating MGUS and smouldering myeloma. Both can be connected to myeloma.

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Diagnosis
2009

Helping doctors diagnose MGUS and smouldering myeloma

We provide funding and support that leads to the first guidelines on recognising and treating MGUS and smouldering myeloma. Both can be connected to myeloma.

A small number of people with MGUS – monoclonal gammopathy of undetermined significance –develop myeloma, while smouldering myeloma usually slowly progresses to active myeloma.

To help doctors recognise these rare conditions earlier, we develop new guidelines for standard tests and warning signs. We work to build knowledge of myeloma whenever we can, so patients see the benefit.

Treatments
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Treatments

Securing Europe-wide approval for thalidomide

Thalidomide can be an important myeloma treatment. We help its manufacturer clarify how it will manage the drug’s risks – and thalidomide is approved across Europe.

Research
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Research

Leading the calls for AL amyloidosis treatments

Chemotherapy and anti-myeloma drugs are used for AL amyloidosis. But are they effective? Our groundbreaking study reveals that better and tailored treatments are needed.

2008

 

Research
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Research

Funding pioneering research into genetics and myeloma

We set up the UK’s first Translational Research Programme focused on myeloma. It soon gets big results investigating how genes affect myeloma.

2007

 

Treatments
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Treatments

Bortezomib approved (aka We don’t take no for an answer)

The first myeloma drug, bortezomib (Velcade®), is initially rejected for use on the NHS. But, together with 30,000 Myeloma UK supporters, we get the decision overturned.

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Treatments
2007

Bortezomib approved (aka We don’t take no for an answer)

The first myeloma drug, bortezomib (Velcade®), is initially rejected for use on the NHS. But, together with 30,000 Myeloma UK supporters, we get the decision overturned.

Bortezomib helps myeloma patients live longer and had been approved for use in Scotland. But it’s turned down for use in England and Wales.

So we launch the Access Denied campaign and 30,000 people add their voice. And we work with the company that makes bortezomib, helping them reach a groundbreaking agreement to fund the drug. In 2007, bortezomib is approved – a massive step forward for patients, achieved by people power.

Fundraising
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Fundraising

An anniversary to remember – thanks to you

At our 10-year anniversary dinner, Myeloma UK supporters donate an unbelievable £650,000 to drive our work forward. Your generosity and commitment amaze us every day.

2006

 

Patient experience
Icon for category type Patient experience
Patient experience

Guidelines for AL amyloidosis? It started here.

We fund the first guidelines on diagnosing, managing, and treating AL amyloidosis. It’s a landmark moment – setting the expected standard for patients and professionals.

Icon for category type Patient experience
Patient experience
2006

Guidelines for AL amyloidosis? It started here.

We fund the first guidelines on diagnosing, managing, and treating AL amyloidosis. It’s a landmark moment – setting the expected standard for patients and professionals.

Funding these guidelines helps improve the quality of care available across the UK. We’ve kept pushing for further improvements ever since.

2003

 

Fundraising
Icon for category type Fundraising
Fundraising

Our amazing supporters help us reach £1 million

Our total income since forming passes £1 million. We said it then, and we’ll never stop saying it – the myeloma community is incredible.

Patient experience
Icon for category type Patient experience
Patient experience

Helping patients get support wherever they are

Our Ask the Nurse email service launched, meaning patients always have someone to turn to for expert advice. Today we answer over 1000 emails every year.

Patient experience
Icon for category type Patient experience
Patient experience

Our landmark guide to living well with myeloma

Practical challenges. Emotional challenges. Medical information. Our groundbreaking guide to living well covered them all – answering myeloma patients’ and carers’ biggest concerns.

Icon for category type Patient experience
Patient experience
2003

Our landmark guide to living well with myeloma

Practical challenges. Emotional challenges. Medical information. Our groundbreaking guide to living well covered them all – answering myeloma patients’ and carers’ biggest concerns.

It’s based on the questions people ask us most often. And, as survival rates for myeloma increase, the guide keeps getting bigger.

Today, we have two Infopacks – one for living well with myeloma and one for carers. We’ll never stop working to make life better for everyone affected by myeloma.

Download the Infopack
2002

 

Patient experience
Icon for category type Patient experience
Patient experience

Talking about life and myeloma

It is our fifth year of providing emotional support and practical advice on the Myeloma Infoline. Our team of specialists have now helped tens of thousands of people.

2001

 

Patient experience
Icon for category type Patient experience
Patient experience

Paving the way for myeloma guidelines

In the early 2000s, a lack of evidence-based guidelines meant myeloma patients’ experiences of diagnosis and treatment varied hugely. So we get to work.

Icon for category type Patient experience
Patient experience
2001

Paving the way for myeloma guidelines

In the early 2000s, a lack of evidence-based guidelines meant myeloma patients’ experiences of diagnosis and treatment varied hugely. So we get to work.

We link up with the myeloma experts at the UK Myeloma Forum and the British Society of Haematology. Together we publish a series of recommendations on how myeloma should be diagnosed and treated.

This makes sure clinicians nationwide follow guidance from the UK’s top myeloma specialists and paves the way for the guidelines that are still used today.

Patient experience
Icon for category type Patient experience
Patient experience

Bringing people together for AL amyloidosis support

Patients and their families join us for the first AL amyloidosis Infoday. It’s now an annual event, with around 100 people joining us every year.

2000

 

Patient experience
Icon for category type Patient experience
Patient experience

Supporting nurses, improving care

Nurses play a vital role in myeloma patients’ lives. But when we launch there were very few specialist myeloma nurses – and no myeloma education programmes for nurses.

Icon for category type Patient experience
Patient experience
2000

Supporting nurses, improving care

Nurses play a vital role in myeloma patients’ lives. But when we launch there were very few specialist myeloma nurses – and no myeloma education programmes for nurses.

So in response, we set up MAGIC – an information-sharing network for nurses. It grows fast, so we start running education days for nurses. Then we develop nurse best practice guides.

Today, our accredited Myeloma Nurse Learning Programme is the gold standard. Over 200 nurses (and counting) have joined us to make sure they provide patients with the best possible care.

Diagnosis
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Diagnosis

Raising awareness of the signs of myeloma

We run the first Myeloma Awareness Week, helping thousands more people understand the signs and symptoms of myeloma. It’s been an annual event ever since.

1999

 

Research
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Research

A new chapter for myeloma research

With big gaps in myeloma knowledge and far too little research, we launched our first research grants. We’ve since invested almost £19m in new studies.

1998

 

Patient experience
Icon for category type Patient experience
Patient experience

Helping AL amyloidosis patients find the facts

We start publishing resources on AL amyloidosis, a rare condition related to myeloma. We’ve 23 produced publications about it since then, plus our annual magazine.

1997

 

Patient experience
Icon for category type Patient experience
Patient experience

A new level of myeloma information and support

When we launched, getting the latest, evidence-based information about myeloma in the UK was anything but easy. So we set about changing that.

Icon for category type Patient experience
Patient experience
1997

A new level of myeloma information and support

When we launched, getting the latest, evidence-based information about myeloma in the UK was anything but easy. So we set about changing that.

We launch the Myeloma Infoline, helping people get practical advice and emotional support. We begin providing information about myeloma and its treatments. And we hold our first Myeloma Infoday in Edinburgh.

Since then, we’ve sent almost 2million publications, answered over 60,000 calls, and hosted more than 200 Infodays. Patients and carers know they can always come to us when they need information about myeloma.

Find out more
Patient experience
Icon for category type Patient experience
Patient experience

Hello, Myeloma UK!

We begin life as the UK branch of the International Myeloma Foundation. Our goal? Simple. We’re here to improve myeloma patients’ lives.

Change lives today

It’s only with the help of generous supporters that we can provide the best possible support and fund research that improves diagnoses, treatment and care.

Everything we do is funded by voluntary contributions, fundraising and gifts left in wills

Accreditation and memberships

The Association of Medical Research Charities (AMRC) is dedicated to helping medical research charities save and improve lives through research and innovation.

The Helplines Standard is the nationally recognised quality standard which defines and certifies best practice in helpline work.

The Patient Information Forum’s Trusted Information Creator is Europe’s only assessed quality mark for online and printed health information.

The Scottish Fundraising Adjudication Panel is responsible for fundraising standards in Scotland and handles any fundraising complaints related to Scottish registered charities.