Latest News

Cancer52 at Britain Against Cancer 2017

Cancer52 is sharing Orchid’s stand, and handing out awareness raising postcards and briefing documents and running two breakout sessions involving volunteer patients speakers and Professor Chris Harrison, National Clinical Director for Cancer.  All are joining our sessions to discuss progress on the Cancer Strategy for rare and less common cancers.


Cancer52 hosts parliamentary reception

Patients and carers at parliament


Cancer52 organised a parliamentary reception which was attended by some 32 charity members, 22 patients and carers, and 19  MPs.

John Baron MP, host of Cancer52’s parliamentary reception

The reception[i] was hosted and addressed by Chairman of the All-Party Parliamentary Group on Cancer (APPGC)[ii] John Baron MP.  The reception’s key objective was to raise awareness of rare and less common cancers amongst MPs which together account for more than half of all UK cancer deaths – more than the ‘big four’ (breast, prostate, lung and bowel cancer).[iii]

MPs met constituents affected by cancer and Cancer52 chair Jonathan Pearce and CEO Jane Lyons.

Attendees heard three individual patient stories which told of the challenges affecting people with rare and less common cancers.

Roger Brown, WMUK

Ingrid Copperman of Cancer52 told of her diagnosis of ovarian cancer, Susan Oliver of Pseudomyxoma Survivor of her diagnosis with pseudomyxoma peritonei, and Roger Brown of his experience with Waldenstrom’s Macroglobulinemia.

Jane Lyons, CEO of Cancer52, said:  “It was great that so many MPs, patients, carers and charities were able to join us, and am sure that as a result they will help support our work by ensuring that decision makers remember the rare and less common cancers when they’re writing policies or allocating funds.

“We are particularly  grateful to John Baron MP for  his work with cancer charities in parliament, and to Steve Brine MP, the Minister responsible for cancer, who sent a video message of support.”

Our thanks to Novartis UK who funded and organised this event in partnership with Cancer52 and to PB Consulting, who helped us on a pro bono basis with the administration of this event.

You can see a range of photos of the event here, as well as video recordings of the speeches.  Steve Brine MP’s message of support for the work of Cancer52 can be viewed below.


[i] The reception was held on 22nd November 2017
[ii] The All-Party Parliamentary Group on Cancer is the voice of the cancer community in Parliament, raising cancer at every opportunity, including on the Floor of the House and in meetings with Ministers and others.
[iii]there were 163,444 deaths from cancer in the UK in 2014.   Despite only 47% of cancers being diagnosed as rare and less common, more than half of cancer deaths (54%) were from rare and less common cancers  Accessed 14/11/2017


Country 2 Country 4 Cancer

Cary Adams, UICC, Jane Lyons,Cancer52 and Ben Gilchrist of BMS with the fabulous BMS riders who raised more than £8,000 for Cancer52.

A team of 10 novice bikers from Bristol-Myers Squibb participated in Country 2 Country 4 Cancer, an epic annual cycling event which set off from Tours, France on Friday 22 September.  The team cycled over four days, and approximately 720km, to cross the finishing line in Uxbridge on Monday 25 September.

Jane Lyons and Ingrid Copperman from Cancer52 were present at a reception to welcome the riders back and congratulate the team on their efforts.  Jane spoke to the members of the BMS UK head office about the work of Cancer52 and Ingrid gave a patient’s perspective.


The team raised an incredible £8437 which has been donated to Cancer52.

Congratulations to all of our amazing #C2C4Cancer riders!

After 18 days and a whopping 4,000 kilometres through six different countries, the 2017 Country 2 Country 4 Cancer bike ride finally comes to an end today in Uxbridge, England.

Our amazing team of UK riders peddled their way across the finishing line earlier this afternoon, brightening up grey and cloudy skies with the news that they managed to raise more than £7,000 towards the fight against rare and less common cancers!

Cancer52 would like to extend a massive thank you to all of #C2C4C riders who accomplished the challenge with awe-inspiring determination and resolve; and of course, to all of you who rallied on the team and donated to the cause.

(25 September 2017)

Introducing Team UK! #C2C4Cancer

Today we say hello to Lindsay Hall and Kerry Johnson, our two Chester riders helping us in the fight against rare and less common cancers.

After seeing the event take place last year, the girls could not wait to put in their applications for the ride this time around; and being two of many applicants from the Bristol Myers-Squibb Chester offices, they were thrilled to find out that they would be taking on this challenge together.

Although Kerry will be missing her daughter’s 10th birthday, and Lindsay’s daughter will be missing her mum as she goes ‘out on the bike again!’, these riders are driven by their cause and your support.

From close friends, to co-workers, to training partners, there will be no stopping this pair as they take on their longest journey yet (more than 350km!) and we wish them well every pedal of the way!

Good luck to the girls, and the rest of the team! #C2C4Cancer

Good luck to our #C2C4Cancer riders!

From Germany to Switzerland, through Italy, Spain, France and the United Kingdom, tomorrow marks the first day of the 2017 Country 2 Country 4 Cancer bike ride!

Following five months of intensive training, 78 novice riders from across Europe – nine from the UK – will be participating in an epic journey to help raise funds for cancer patients and promote advanced cancer control globally. Kicking off today in Munich, Germany, the ride will last 18 days and cover a total of 4,000 kilometres, ending on the 25th September in Uxbridge, England.

Although none of the riders have previous experience in long-distance bike rides, all are passionate about raising funds in the fight against cancer. Funds raised by the UK team will support the work of Cancer52 in ensuring the voice of people with rare and less common cancers is heard. To pledge your support, please visit the C2C4C FundRazr page.

We hope you will join us in wishing good luck to all the riders taking part and if you want to keep up to date with their progress, make sure you follow us on Twitter!

Good luck to the team!

(7 September 2017)


All Members Meeting – 11 July 2017

The agenda has now been finalised for the next Cancer52 All Members Meeting taking place on Tuesday 11 July from 9.30am to 12.30pm in the Community Hall at St Anne’s Soho, 55 Dean Street, London W1D 6AF.

We have a full agenda with some great speakers lined up:

  • Andy Murphy, Head of Datasets, National Cancer Registration and Analysis Service (NCRAS) will be presenting on NCRAS data sources used for registration, the data liaison work with Trusts, update on rare cancer data collection and an overview of Cancerstats portal
  • Rupi Dev, National Programme of Care Manager – Cancer, NHS England Specialised Commissioning, will be updating us on progress on the rarer cancer MDT recommendation 40 from the Cancer Strategy
  • Emma Logan, Campaign Team Lead – Ageing Well, PHE AND Amanda Boughey, Programme Lead – Early Diagnosis, Cancer Research UK, will be feeding back on the Be Clear on Cancer Abdominal Symptoms campaign

RSVP here.


General Election 2017: Cancer52 Calls to Action

In the run up to the 2017 General Election Cancer52 has produced a one pager document on its ‘Calls to Action’.

In the 2015 election Cancer52 called for refreshed strategies; more research into rare and less common cancers, and early access to modern treatments.  Important progress towards these goals has been achieved.

For the 2017 General Election Cancer52 is calling for three specific actions:

  • Act to reverse the newly introduced NICE Budget Impact Threshold which disadvantages rare and less common cancer patients’ access to drugs
  • Address the lack of available national data about rare and less common cancers. This lack hinders knowledge and measures of improvement
  • Assess the impact on rare and less common cancers of all policy decisions made to health services, including research and cross-border care

To read the full document click here.




8 December 2016

Available from 6 December 2016 to mark the Cancer52 session at Britain Against Cancer – a new report from Cancer52 on the role of the CNS in rare and less common cancers – some personal perspectives from patients and nurses.

With thanks to our supporters but especially to those who shared their story.


Independent National Cancer Advisory Group

Terms of reference, minutes of the first meeting and membership are now available for this Group, whose role is to advise and assess on progress of implementation of Achieving World Class Cancer Outcomes (AWCCO). The group is independent of Government, the NHS Arms Length Bodies and the National Cancer Transformation Board.  Cancer52 CEO Jane Lyons is a member of the Group.


My Cancer My DNA – Genetic Alliance patient charter

Cancer52 is working with Genetic Alliance on its patient charter, My Cancer My DNA.  Genetic Alliance today (8 March) has launched its new report “Genome Sequencing: what do cancer patients think?” Read more here.


New paper published that looks at diagnosis challenges for rarer cancers

A new study, published today (Friday 26 February 2016) looks at the challenges of timely diagnosis for people with rarer cancers.

Authored by  Silvia Mendonca, Gary Abel and Georgios Lyratzopoulos the paper is published in the British Journal of General Practice.  Dr Lyratzopoulos, MD, FFPH, FRCP, MPH, DTM&H is Cancer Research UK Clinician Scientist Fellow & Reader in Cancer Epidemiology at University College London.

The paper aims to raise awareness of how challenging it can be to appropriately suspect the diagnosis of cancer and to provide researchers and research funding bodies with the evidence necessary to support research and initiatives to improve the timeliness of diagnosis.

The research is based on an analysis of more than 95,500 patients who responded to the Cancer Patient Experience survey, of whom more than 7,800 had one of 12 rarer cancers without prior evidence on pre­diagnostic consultations.

The full paper can be read here and FAQs  here.



Cancer 52 Position Paper on Access to Medicines and Treatments

Cancer52 has published a position paper  ‘Cancer 52 Position Paper on Access to Medicines and Treatments’ which gives a clear view on the principles of what we want for people with rare and less common cancers.

The paper’s aim is to give a starting point from which Cancer52 will formulate responses to reviews or consultations, including the current CDF consultation.


Cancer52 at Britain Against Cancer December 2015

Available for the first time at Britain Against Cancer on 8 December are two new briefings from Cancer52:

“Living with a rare or less common cancer, patient experiences of treatment and care” – our new patient experience report  – what does the evidence from the National Cancer Patient Experience Survey show us about experience of people with a rare or less common cancer?  What is it that can make the difference to that experience?

Read our chair’s summary of the challenges faced by people with a rare or less common cancer patient experience or access the full report

 Speaking up for patients Patient organisation involvement in Health Technology Assessment (HTA) with a focus on Patient and Clinical Engagement (PACE) at the Scottish Medicines Consortium (SMC)” – a new reporton patient group involvement in the new Patient and Clinical Engagement (PACE) process at the Scottish Medicines Consortium (SMC) – what can we learn from these experiences and what can we share?

Read a summary of the report findings or access the full report

Also available:

‘My Cancer, My DNA’ – Information on how to get involved in our joint project with Genetic Alliance – we are looking for people to take part in the survey that will inform a patient charter to be launched in Spring 2016.

“If we work together …. we can make as much noise as the big four” – our new postcards

Cancer52 Policy Briefing – a briefing on the implementation of Achieving World Class Outcomes: A Strategy for England 2015-2020

“Rare and Less Common Cancers: Incidence and Mortality in England, 2010 to 2013” – copies of the report produced jointly by Cancer52 and the National Cancer Intelligence Network (NCIN) at Public Health England .  The report, published at the NCIN conference earlier in 2015, gathered for the first time data on nearly 280 cancers and gives incidence and mortality rates on some of the rare and less common cancers for the first time.

Read the press release about the report or access the full report


Cancer52 – partner in Genetic Alliance  project

Cancer52 has become a partner in Genetic Alliance’s ‘My Cancer, My DNA’ project, together with Cancer Research UK, Bloodwise and Breast Cancer Now.

The project is funded by an NIHR Biomedical Research Centre award to the ICR and Royal Marsden and we have signed up to this project because we believe the work is important.

It focuses on trying to establish how people feel about the use of genetic information in the NHS and gives people who either have been diagnosed with cancer, or a member of their family, or is suspected to have or has an increased predisposition for cancer the chance to share their views.

Please do share it within your patient communities, and if people do respond to Genetic Alliance it would be great to know that they have done so.

The targeted output of this project is a Patient and Family Charter which will be launched during Genome Sequencing Week (March 2016, w/c 7th).

The flyer provides further information about the project and you can complete the survey here.  Please contact Angela Wipperman 020 7704 3141 if you have any questions.


Cancer52 Policy Briefing identifies calls for rare and less common cancers

The  Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020 was published in July 2015.

Cancer52, a coalition of more than 80 charities working in the field of rare and less common cancers,  has been involved in the development of the Cancer Strategy since its inception.  Former Chair Clara MacKay represented the coalition on the Cancer Taskforce alongside other key representatives from the cancer community.

The report contains 94 recommendations.

The Cancer52 Policy and Public Affairs Steering Group reviewed all the recommendations, identified those most relevant to rare and less common cancers and has now written a Cancer52 Policy Briefing on the implementation of the Strategy and the key elements the coalition would like to see taken forward for rare and less common cancers.

As a result of this review Cancer52 now has five key calls which it believes will help ensure that measures for rare and less common cancers are delivered.

Cancer52 calls for:

  1. Cross-party political support for the implementation of the Strategy in NHS England.
  2. Confirmation from the Government that it is committed to driving up standards in cancer care through implementation of the Strategy.
  3. An express mention of the Strategy and financial resources made available for its implementation to be included in the NHS settlement provided within the Chancellor’s Autumn Budget Statement. This will ensure that NHS England has political confidence, capacity and resources to ensure that the plan is taken forward.
  4. Confirmation that NHS England is committed to implementing recommendations contained within the Strategy and a blueprint outline for how this is going to be prioritised and executed.
  5. A seat for Cancer52 on any Implementation Taskforce established to ensure that the Strategy is delivered.


Radio 4 Inside Health interview

23rd September 2015

Chair Jonathan Pearce is interviewed on BBC Radio 4’s Inside Health Programme on the Cancer Drug Fund and the extra challenges faced by people with rare and less common cancers.


In response to the National Audit Offices Investigation into Cancer Drugs Fund report

Jonathan Pearce, Chair of Cancer52, said:

‘Cancer52 calls on NHS England to learn from The National Audit Office’s report[1] and ensure that the Cancer Drugs Fund (CDF) focuses much more on the needs of patients with rare or less common cancers.

‘While we recognise that the CDF has helped more than 74,000 people access cancer drugs not otherwise available on the NHS in England between 2010 and 2015, with 1 in 5 of all patients starting a new chemotherapy regime being CDF-funded, one of its main objectives was to help people with rare and less common cancers access new and innovative treatments.

‘The report highlights that 59% of the patients supported by the CDF were being treated for colorectal, prostate and breast cancer (three of the four most common types of cancer), which account for only 41% of overall cancer prevalence.[2] This is disproportionate to the prevalence of those three cancers which account for only about 41% of all cancer diagnoses.

‘Rare and less common cancers account for 46% of all new cancers cases, but 54% of all cancer deaths. Although more than 70% of the drug indications (82 of 111 indications) available through the CDF in 2014-15, were for rare and less common cancers, they ended up reaching less than 40% of the people supported by CDF treatments in 2013/14 and 2014/15.

‘While no-one wants to deny anyone access to treatments that might benefit them, the findings raise serious questions about how the CDF has managed not only fair access to treatments, but also its own budgets and its understanding of the value of effective treatments.

‘Furthermore, another important objective of the CDF was to collect real-world clinical audit data on its treatment. However, according to the report the CDF has not collected usable data on the impact of the Fund’s treatments on patient outcomes, including survival (NAO report, para 4.1).

‘‘NHS England must listen to and learn from the report’s findings and analysis in reforming the way the CDF is managed and how it interfaces with the NICE appraisals system for new treatments. At a time when new and innovative cancer medicines are being developed quickly, it is imperative that the NHS and pharmaceutical companies work together for the benefit of patients, particularly those with rare and less common cancers where there are particular challenges with drug pricing and assessing clinical effectiveness due to the small populations of patients involved.

‘With the CDF due to come to an end in March 2016, we look forward to the anticipated consultation due out imminently. It is imperative that any new system recognises the needs of patients with rare and less common cancers.’

[1] Investigation into the Cancer Drugs Fund (National Audit Office, 17 September 2015) – available here.

Cancer Drug Fund Delistings

Cancer52 comment on Cancer Drug Fund announcement of 4 September 2015


Stopgap donate to Cancer52

Our thanks to Stopgap who have donated £400 to Cancer52.

Stopgap is a small (50 people) owner managed business which finds marketing professionals for businesses, including marketing agencies.

Says Jackie Pinfold of Stopgap, who contacted Cancer52 to make the donation, “We take our social commitments very seriously – and have a lot of fun in the process – supporting Marie Curie every Christmas by singing carols at Richmond railway station, having regular food collections for local homeless charities and food bank operators plus our Charity Team frequently organises events such as our recent Summer Fayre or cake sales. We select charities to support, either for one off events or for the year and we’ve done a couple of things for AMMF. We were asked for nominations for a charity to receive our end of year funds so I suggested Cancer52 because a few of us have been affected deeply by some of the lesser known cancers – I lost my mum just over a year ago to cholangiocarcinoma, hence my support of AMMF.

“It’s only a modest £400 but I’m sure it will go to good use with Cancer52.”


Cancer52 welcomes new cancer strategy

The Independent Cancer Taskforce has published its strategy and launched an executive summary and press release (20 July 2015).

Clara Mackay, deputy director of Cancer52 and member of the Taskforce, said: “There is much to be welcomed in this strategy for all those affected by cancer. However, for rare and less common cancers the underlying principle that no two patients are the same, either in their cancer or their needs, marks a hugely positive change in approach. I am extremely optimistic about the impact that implementation of the recommendations set out in this strategy will have on the experience of rare and less common cancer patients right from diagnosis through to treatment and support.”

Jonathan Pearce, Chair, Cancer52, said “We welcome this  new strategy, and in particular the new acknowledgement that for people with rare and less common cancers that one size does not fit all.

“As an alliance of more than 80 charities working in the field of rare and less common cancers Cancer52 occupies a unique role in the cancer community, and this role was acknowledged with the inclusion of board member Clara Mackay within the Taskforce advisory board.

“We now look forward to remaining closely involved with the next stages, the  implementation and oversight of the delivery of the strategy.”


“Rare and Less Common Cancers: Incidence and Mortality in England, 2010 to 2013”

We are delighted to announce that our new report “Rare and Less Common Cancers: Incidence and Mortality in England, 2010 to 2013” is published today (Monday 8th June 2015) on the first day of the NCIN conference in Belfast.  It is a report produced jointly by Cancer52 and the National Cancer Intelligence Network (NCIN) at Public Health England.

The new report gathers for the first time data on nearly 280 cancers and gives incidence and mortality rates on some of the rare and less common cancers for this first time.

The report shows that deaths from rare and less common cancers in England continues to rise and  that there were 2,700 more deaths annually in 2013  from rare and less common cancers in England than in 2010.  We have issued a press release on the report, and the report can be viewed in full on the NCIN website.

Our thanks to the project team that brought this massive piece of work together.  The project board comprised from within the NCIN Nicky Coombes, Lucy Elliss-Brookes, Sam Johnson,  Claudia Oehler and Mick Peake;  and from within Cancer52 Jane Lyons, Clara Mackay of Pancreatic Cancer UK and Helen Morement of AMMF.

We all very much hope that the data within the report will help our individual members in their campaigning, fundraising and awareness raising work and are very much open to suggestions as to how we might help make that happen.


Parliamentary Questions and Answers

Following our successful Parliamentary event in December,  details of how the last government answered our questions on rare and less common cancers.

We will aim to revisit this scenario with the new government.


Consultation on Investing in Specialised Services

On 23 April, Cancer52 responded to the NHS public consultation on Investing in Specialised Services.

Read more of our submission.


Jonathan Pearce appointed as Chair of Cancer52

Jonathan Pearce 2Cancer52 is delighted to announce that Jonathan Pearce, chief executive of the Lymphoma Association, has been appointed as Chair of Cancer52, succeeding interim Chair Clara Mackay.

Said Clara:  “I’m delighted to be handing over this role to Jonathan at such an important point in Cancer52’s development. I am confident that Cancer52 will greatly benefit from Jonathan’s passion and experience – and that the voice of rare and less common cancers will be well represented where and when it matters.”

Jonathan’s appointment takes effect from 21 April 2015.


Cancer Drug Fund Information Update

New information has now gone up on the NHS England website regarding the decisions made on the CDF, so please look here for further information.

The full list of decisions can be seen here.


Cancer52 Statement re Cancer Drug Fund (CDF) Delistings

As a member of the Cancer Drug Fund (CDF) Charity Group Cancer52 has signed an open letter to Professor Peter Clark, Chair of the CDF.

You can see the full letter here.

Essentially we welcome the opportunity  to be engaged in the CDF process , particularly through the invitation to nominate a  lay representative for the panel from Cancer52 (Annwen Jones, CEO of Target Ovarian Cancer).  However,  as we highlighted in our Cancer52 response to the Cancer Drug Fund Standard Operating Procedures (CDF SOP) consultation we do have concerns about the approach  by which the CDF employs to delist drugs, including the lack of transparency. In relation to the announcement of 12th January 2015 we are particularly concerned that  many of  our 80 plus members are unable fulfil their role in supporting people with cancer if we are  not   kept appraised in good time of changes in the approved drugs on the CDF list.

The full list of decisions can be seen here.

For the future we remain committed to working to ensure there is a voice for rare and less common cancers at every stage in the process.  The Cancer Drug Fund was set up with an aim of ensuring that there was a route to allow people with rare and less common cancers access to drugs that they wouldn’t otherwise be able to access, and our aim is to ensure that people with those cancers do not lose out as a result of any changes to the CDF.


Cancer52 Chair joins NHS England Cancer Taskforce

On Sunday 11th January 2015 NHS England announced details of a new independent taskforce being set up to develop an updated cancer strategy for England. This follows Simon Stevens’ commitment to develop such a strategy at Britain Against Cancer in December.

Harpal Kumar (CRUK’s CEO) has been asked to chair the taskforce which includes representatives from NHS England, DH, PHE, CQC, local government, CCGs, cancer doctors, patients, CRUK, Macmillan and Cancer52.

A high level ‘statement of intent’ will be published in March with a final strategy ready in the summer,  for a new government to endorse and publish.  The strategy will cover the whole cancer pathway – prevention to end of life – and consider how cancer services can embrace the principles of NHS E’s Five Year Forward View (new models of care etc.)

The taskforce aims to represent all parts of the system responsible for delivering improved cancer outcomes and care and we are delighted that the Cancer52 Chair Clara Mackay has been invited to join this taskforce.

12th January 2015


Parliamentary event “The hidden majority – improving outcomes for people with rare and less common cancers”

We are delighted to be hosting a parliamentary event in December 2014, hosted by John Baron MP, Chair of the All-Party Parliamentary Group on Cancer.

Working with Novartis Oncology we are aiming through this event to raise awareness of rare and less common cancers amongst MPs.    54 per cent [i] of UK cancer deaths are from rare and less common cancers but policy to improve outcomes for patients has focused on the ‘big four’ – lung, bowel, prostate and breast.   We believe there must be parity between rare and less common cancers and the ‘big four’ and that without this, outcomes for people with these cancers are unlikely to improve.

At the event we are providing MPs with data which illustrates how many people in their local area are affected by rare or less common cancers and introducing MPs to charities and patients within their area.

This event has been funded by, and organised in partnership with Novartis Oncology, UK

[i] Data taken from Cascade, National Cancer Registration Service, Public Health England, accessed 21st May 2014


Cancer Drugs Fund Consultation

On 31st October 2014 Cancer52 submitted its response to the NHS England Consultation:  Proposals for a sustainable Cancer Drugs Fund.

You can read a summary of our submission here.

Our key calls are for

– a wider debate, just as called for by NICE, to create a consensus on what we need to enable access to new medicines for those with rare and less common cancers

– a system that:

 – includes new definitions for both ‘unmet need’ and ‘rarity’

 – gives appropriate weight in re-evaluation to the needs of patients with cancers that have extremely high mortality rates or where there are limited treatment options

 – is transparent

– is clinically, not financially driven

If you would like to read the Cancer52’s response to the CDF (October 2014) consultation in full, please click here.


National Cancer Patient Experience Survey 2014

The National Cancer Patient Experience Survey 2014 was published this morning.  Our comment on its publication is here.


Cancer52 publishes Manifesto for the 2015 General Election

Cancer52, an alliance of 80 charities working in the field of rare and less common cancers is today (19th September 2014) publishing its Cancer52 Manifesto.

With over 150,000 people diagnosed with a rare and less common cancer across the UK in 2011[i], and with these cancers accounting for 75,000 cancer deaths in 2012, Cancer52 says that rare and less common cancers must be a priority regardless of who is in power from May 2015.

In summary Cancer52 wants:

  1. A refreshed cancer strategy in all four countries in the UK – and for these to clearly include rare and less common cancers
  2. More research into rare and less common cancers – including rare and less common cancers as part of the 100,000 Genomes Project
  3. Early access to modern treatments and services – with decisions on access involving patients and not a tick box exercise


To read the full press release click here

To read the manifesto click here


[i] Cancer Research UK, UK Cancer Incidence 2011 and mortality 2012 summary – Counts, September 2014


Understanding HTA and Specialised Commissioning Workshop

Understanding HTA flyer

Joint VBA Statement

The Joint VBA Statement, prepared alongside Genetic Alliance UK, which nearly half our members signed, was submitted on Friday 12 September to Sir Andrew Dillon, Chief Executive at NICE and Professor David Haslam, Chair of NICE.


Cancer52 response to announcement of new investment for Cancer Drugs Fund

(28th August 2014)

Cancer52 welcomes the new additional investment of £160 million in the Cancer Drugs Fund (CDF) announced by Health Secretary Jeremy Hunt today (28th August 2014) and the Government’s commitment to review effectiveness of the drugs currently on the CDF list.

Says Cancer52 Chair Clara Mackay, “The CDF has helped thousands of people with rare and less common cancers access treatments over the past few years and this new investment will mean that more can be helped. Rare and less common cancers account for 54% of all cancer deaths, and accordingly any new approach must incorporate the flexibility to ensure that people with rare and less common cancers are well served.  In some cases, where there have been no or only marginal advances treatments for rarer cancers  they may require special consideration, for example where there are no other treatments available for a particular cancer.

“Finally we are delighted to be part of a small number of cancer organisations to have been consulted by the Health Secretary on the future of the CDF and look forward to working with the Government on behalf of all our Cancer52 members, and the patients they represent.”


Cancer52 response to the NICE consultation 

Please find here Cancer52’s response to the NICE Methods of Technology Appraisal Consultation, which was submitted to NICE on Tuesday 17 June.


Clara Mackay appointed as interim chair of Cancer52

Cancer52 is delighted to announce that Clara Mackay, Deputy CEO of Pancreatic Cancer UK, has been appointed as interim chair of Cancer52.

She has a great understanding of the issues that affect rare and less common cancers, as pancreatic cancer has one of the poorest cancer survival statistics of all cancers.

Said the Cancer52 board “We are pleased to confirm the appointment of Clara Mackay as interim Chair – we are sure she will bring the qualities her position with Pancreatic Cancer UK utilises so well to her new role with Cancer52.”

Clara’s appointment takes effect immediately.OK


Tim Kelsey, George Freeman MP, and Be Clear on Cancer Team at Cancer52 All Member Meeting

Cancer52 is delighted to have secured some great speakers for our All Members Meeting on Tuesday 29 April.

The first session will focus on data and feature Tim Kelsey, National Director, Patients and Information, NHS England and George Freeman MP, Patients4Data.

We are also pleased to welcome Alexandra Thackeray, Evaluation Co-ordinator, Be Clear on Cancer and James Brandon, Head of Marketing, Healthy Ageing and Health Protection, who will be giving an update on the Be Clear on Cancer campaign.

Finally, Louise Bellamy, PM Group will be introducing the QiC Oncology Awards and Kate Kershaw, The Brain Tumour Charity, will be talking about how her organisation won an award in 2013.

Please contact for more information or to attend the meeting.


Cancer52 responds to NICE consultation on Technology Appraisals Process Guide

On the basis of the increasing experience of our members with NICE Technology Appraisals Cancer52 has commented in detail on a number of aspects of the Technology Appraisals Process Guide consultation, but identified three key interrelated issues that it believes important for NICE to truly meet their aspiration of  ‘Putting patients and the public at the heart of NICE’s work’.

David Ryner, Head of Policy for Cancer52, said of the response, “Technology Appraisal processes are complex; participation and engagement represents real challenges for smaller patient groups, such as many  Cancer 52 member groups. That’s why our response presses NICE to make improvements to the assistance it offers to potential patient group and patient participants. ”

Cancer52’s summary of asks to NICE is given here and covers the three key interrelated areas of process, methods and implementation. The full Cancer52 response accessed here.

NICE announced on 26th March 2014 the opening of the consultation on Value Based Assessment.  Cancer52 will be preparing a response to this consultation which runs until 19th June 2014.  If you’re a Cancer52 member and would like to contribute to the Cancer52 response please let us know as soon as possible, and no later than 17th April 2014.


100K Genome Project 

In December 2013, Cancer52 wrote a letter to Sir John Chisholm, Executive Chair of Genomics England, expressing its alarm that the 100K Genome Project would be limited to lung, breast and colorectal cancers, whilst ignoring rare and less common cancers.

Cancer52 asked Sir John to provide the criteria used for selecting cancer types for the 100K Sequencing initiative as well as an understanding of the process that will be used to select future cancer sites; and how representations for inclusion could be made to Genomics England Ltd.

Cancer52 received a response from Sir John in January 2014 explaining that they will work on a pilot  study with prostate, lung breast, colorectal and ovarian cancer to be sure they can get sufficient samples to test processes and to have the chance of deriving meaningful results before a planned start of the main programme in early 2015.

Sir John did however assure Cancer52 that they intend to focus on rare cancers as part of the main programme and will update Cancer52 after Easter explaining what the approach will be.


Cancer52 publishes briefing paper on the UK Strategy for Rare Diseases – 24 February 2014

Making sure that rare cancers aren’t written out of the script

Cancer52 published its briefing paper on the UK Strategy for Rare Diseases.

Detailed national implementation plans from all four nations in response to the Strategy were due for publication later that week on Rare Disease Day (28th February 2014).

More than 80 per cent of Cancer52’s 74 member organisations[1] work with rare cancers, ie one that affects five people or fewer in 10,000[2].

As such one of Cancer52’s key asks within the statement is that Cancer52 be represented on the Department of Health Rare Diseases Stakeholder Forum Group

To read the full press release click here.  To read the full position statement click here.

[1] Source Cancer52 member survey February 2014

[2] A rare disease is a life-threatening or chronically debilitating disease that affects 5 people or fewer in 10,000 and requires special, combined efforts to enable patients to be treated effectively.


Cancer52 publishes briefing paper on NICE and Value Based Assessment (VBA) – 21 February 2014

Cancer52 published its briefing paper  “NICE and Value Based Assessment (VBA) – NICE do it their way.”

NICE is due to consult on its proposals on VBA and to announce an opening date for the consultation shortly.

To read the full announcement click here.  And the full position statement click here.

In summary Cancer52 is asking that:

  • NICE  ‘road test’ their approach working with patients and carers – setting out how patients and carers will be able to contribute to ensure a fuller understanding of the burden of illness and the wider societal benefits of new medicines
  • NICE should also set out how these proposals would have changed previous recommendations so that we can all understand whether these are changes in reality, or just theoretical concepts adding to what can feel like the ‘black box’ of economic analysis undertaken to inform recommendations
  • Full and open approach to evaluations of VBP/VBA changes. This should include how far VBP has changed research priorities, including the focus on research to treat those with rare and less common cancers.

Cancer52 is willing to work with all stakeholders to build on the opportunities of reform and to improve      access to medicines in the UK.


Cancer52 welcomes NCIN Routes to Diagnosis research 

The National Cancer Intelligence Network (NCIN) has published new research on Routes to Diagnosis (RtD) for 55 cancer sites or groups, including some 30 less common and rare cancers and Cancer of Unknown Primary (CUP).

Read our response here.


Chair of Cancer52 appointed MBE in New Years Honours List 2014

Our Chair, Allyson Kaye, has been awarded an MBE in the New Years Honours List 2014 for services to women with ovarian cancer.

Allyson founded Ovarian Cancer Action in 2004, as a campaigning voice for women with ovarian cancer – lobbying for greater understanding of its complexities and investigating symptoms awareness and late diagnosis.

In September 2013, Allyson was appoint Chair of Cancer52, an alliance of some 70 cancer charities working in the less common and rare cancer field.

On news of her appointment, Allyson said: “It was a wonderful surprise to open the letter from the Cabinet Office and see that I had been nominated for this award.”

Jane Lyons, CEO of Cancer52 said: “I am very pleased that Allyson’s work has been recognised in such a wonderful way.  She has worked tirelessly for women with ovarian cancer and we now welcome her commitment and expertise as she applied her knowledge across a wider range of cancers to support us at Cancer52.”


Government agrees to full consultation of the Medical Innovation Bill – 22 November 2013

The government agreed to full consultation of the Medical Innovation Bill spearheaded by Lord Saatchi.

Jeremy Hunt, the Secretary of State for Health said “The government should do whatever is needed to remove barriers that prevent innovation which can save and improve lives. We must create a climate where clinical pioneers have the freedom to make breakthroughs in treatment.”

The government expects to launch this consultation in January 2014 and to respond by May 2014

Read the full written ministerial statement here.


Cancer52 at Macmillan Primary Care Conference – 21-22 November 2013

Cancer52 had a stand at exhibition at the MacMillan Primary Care Conference in November 2013.  Visitors to the stand learned of the work of Cancer52; we shared our new NCRI/Cancer52 report on ‘Research into less common cancers’ and signposted people to individual member charity websites.

Cancer52 would like to thank the Macmillan GP team who invited us to have a stand following a meeting us at the NCIN conference in June 2013.

Further information from


NCRI and Cancer52 publish report on research spend – 4 November 2013

NCRI C52 reportA new report from the National Cancer Research Institute (NCRI)  and Cancer52 was published in November 2013, showing for the first time the level and type of research investment in rare and less common cancers by members of Cancer52.

To read the  full release click here, key findings summary click here, and the full report click here.


Cancer52 at ECCO 2013 – 27 September-1 October 2013

Cancer52 was present at ECCO 2013 in Amsterdam.


NCRI and Cancer52

Review of research spend on rare and less common cancers

Cancer52 worked in partnership with the National Cancer Research Institute to review research spends of its members in 2012.

The aims of this review were to understand for the first time the level and type of research investment levels by Cancer52 members, provide data for Cancer52 use and to work with the NCRI share learnings at a workshop for members.

Key findings of the review were published at the NCRI conference in Liverpool in November 2013 with a workshop to be held in spring 2014.

Further information


Media coverage of rare and less common cancers – 15-16 June 2013

Rare and less common cancers are going up the media agenda – in  June 2013 there was a massive piece in the Telegraph on neuro endocrine cancers (NETs) – see Cancer52 member NET Patient Foundation  and pancreatic cancer, courtesy an interview on Radio 4’s Saturday Live (listen again 1 hr 17 mins into programme) with 16 year old scientist Jack Andraka, who’s invented a landmark new test for pancreatic cancer – C52 members Pancreatic Cancer UK  and Pancreatic Cancer Action.


BBC Scotland programme “Life, Death and Enormous Amounts of Money” – 16 January 2013

Cancer52 supported the CML Support Group’s call for an apology from BBC Scotland for footage within its programme “Life, Death and Enormous Amounts of Money”  broadcast Wednesday 16th January 2013.  The programme attached ‘price tags’ to the lives of individual patients with rare cancers.

Chair of Cancer52 Simon Davies said, “If the government and general public really wanted to save on the drugs bill they should be reviewing the money spent on unnecessary drugs and treatments for common diseases that are paid for without question and achieve very little.”

The full programme can be viewed here, and the CML Support Group’s full response here.


Cancer52 Second Annual Briefing – House of Lords – 18 October 2012

The full report on the Cancer52 Second Annual Briefing held on 18 October  at the House of Lords is now available here.


QiC Excellence in Oncology Awards – November 2012

Simon Davies, Chair of Cancer52, presented Professor Sir Mike Richards CBE with his Lifetime Achievement Award at the QiC Oncology Awards dinner in November 2012.

In his presentation speech Simon said, “You will all know of Professor Richards’ achievements in developing and delivering cancer plans in England and influencing those of the devolved nations. As our Chief, we can all vouch for the incredible impact he has had on the work of politicians, health planners and health professionals. Most importantly though are the benefits to the lives and deaths of patients and the families that support them.”

The announcement of the award was received with a standing ovation from the audience and was made as Professor Richards moves on to his new role at the NHS Commissioning Board Authority as Director for Domain One, providing overall leadership for reducing avoidable death.  He has been the National Clinical Director for Cancer for 13 years.

Pictured here (left to right)  – BBC presenter Nick Owen, Professor Sir Mike Richards CBE and chair of Cancer52 Simon Davies.


Second Annual Briefing at House of Lords – October 2012


Nearly 80 people attended Cancer52’s second annual briefing at the House of Lords on Thursday 18th October.

Attendees included a mix of stakeholders in the rare and less common cancer community from industry, governmental bodies, partnership organisations from the UK and Europe and many of Cancer52’s 61 charity members.

Speakers were Professor Sir Mike Richards CBE, National Clinical Director for Cancer; Cancer52 Honorary President Baroness Delyth Morgan of Drefelin, Consultant Medical Oncologist Dr James Larkin of the Royal Marsden and Cancer52 Chair Simon Davies.

Speeches covered many topics from early diagnosis to the need for drugs that could control and perhaps even cure cancers that have spread, to highlighting the continuing challenge that no national cancer initiative should exist without a rare and less common cancer perspective.

Membership of Cancer52 is increasing steadily and the organisation has recently published its vision of becoming the ‘go to’ organisation of choice for rare and less common cancers. With the support and expertise of its member organisations Cancer52’s success in this area is growing, with only sustainable funding and infrastructure challenges likely blocks to continued progress.

A fuller report on the House of Lords briefing will be available by end November but in the interim please contact Jane Lyons for further information on working with Cancer52.