5 Things You Need to Know This Month....

EuropaColon is organising, attending and presenting many colorectal cancer congresses, patient conferences and political events throughout Europe. Please click on the following links to learn more about forthcoming events. 

23 February 2018

PRESS RELEASE - Launch of European Colorectal Cancer Awareness Month March 2018

March 2018

Immediate Release

The equivalent of twelve bus loads of people die each day from colorectal cancer in Europe!

Every year in Europe around 470,000 people are diagnosed with colorectal cancer, half of whom are likely to die. Whilst the disease is predominantly one of the over 50 ‘s a frightening increase is being seen in those under 50 being diagnosed across Europe

March is European Colorectal Cancer Awareness Month (ECCAM). Launched in 2008 by EuropaColon in the European Parliament in Brussels the meeting has become an annual event to kick start a month of intensive campaigning across Europe.

Colorectal cancer is the second most common cancer in Europe ..... yet it is a cancer that is preventable and highly treatable!

In the 10 years since ECCAM was first launched an extraordinary amount has been achieved. However this year EuropaColon asks the question....” has enough been done to change the situation Europe?There is still a long way to go, particularly in implementing colorectal cancer screening across the European Union.

EuropaColon says It is #Time4Change.

In 2017 EuropaColon launched a survey on the Unmet Needs of Patients Living with Metastatic Colorectal Cancer (mCRC) and is the first time a survey of this kind has been commissioned for colorectal cancer. The goal being to recruit 1,000 patients from across 12 Eruopean countries! To date over 700 surveys have already been completed. Early results indicate clearly that there is still an overwhelming need for the implementation of formal colorectal cancer population screening programs for early diagnosis and prevention!!

“Not enough progress is being made towards implanting a system of colorectal cancer across the European Union.” is the damming view of Dr Alfred Sant MEP during the launch of #ECCAM 2018 Dr Sant adds “the goal should be that for all citizens in all EU Member States easy and affordable screening for colorectal cancer is made available!”


Early screening saves lives. Many in Europe have no access to it. It is #Time4Change #ECCAM

Together we can do more to reduce the number of deaths from Colorectal Cancer

Visit http://www.europacolon.com/ to download the ECCAM logo; Facebook and Twitter header images. ACT NOW and download the ‘I am supporting #ECCAM18 because...poster......add a personal message and photo and share on social media using the hashtags #ECCAM18 and #Time4Change.


For more information contact:
Jolanta Gore-Booth at jola@europacolon.com


EuropaColon is the voice of colorectal cancer patients in Europe. Its aim is to save lives by bringing together all key stakeholders in the fight against this cancer which is highly treatable if diagnosed early.

The Organisation is made up of Affiliate and Associate groups working together to prioritise and raise the profile of digestive cancers in Europe. It has a presence in 32 European countries with over 40 member groups

The Organisation and its members campaign for prevention, early diagnosis of colorectal cancer. Formal Population Screening programmes and conformity to EU guidance and policies in Europe.

01 February 2018

5 Things You Need to Know...January

Five things you need to know…. January

Happy New Year to all our friends and colleagues! We hope you all managed to have a relaxing break (although I’m sure it feels a long time ago already!) and you are as excited about 2018 as we are – there’s lots going on at EuropaColon and this year promises to be a very productive one.

Highlights from January included:

1)    Celebrating our 14th Anniversary

14 years have flown past but we are thrilled with what we have been able to achieve and contribute in this time. In particular it has been an honour to help create a single European community of 43 groups in 32 countries and to get to know so many of you over recent years. When we think about all of the incredible awareness campaigns instigated by our groups, the growth of ECCAM and Annual Master Classes… we are definitely moving in the right direction!

Look out for an update on our website soon outlining all the inspirational work done by our member groups in 2017.

2)    A pivotal moment in our history

While it is extremely rewarding to look back, it is even more exciting to look forward and it is certainly a year of change for our organisation. More information will be coming soon including the outcomes of a major strategy meeting to be held in February. In the meantime, we have just completed a move into new offices and started the process of re-registering EuropaColon in Belgium. Lots more news to follow in the coming months! 

3)    Getting ready to launch initiatives in digestive cancers

Towards the end of last year we announced that we would also be moving into oesophageal and gastric cancer, both greatly under-represented cancers. Activities are gathering pace and our first major initiatives in this area will be an Unmet Needs survey on gastric cancer and, if funding is confirmed, setting up support meetings for patients, family and carers.

4)    Great progress in our metastatic colorectal cancer survey

We are very pleased with the way our survey on the Unmet Needs of Patients Living with Metastatic Colorectal Cancer (mCRC) is progressing. Four of the 12 countries are now fully recruited and we continue to make progress with the remainder. 

This would not be possible without the help of our groups and all the patients, clinicians and nurses involved in recruitment who are going the extra mile when necessary. For example, Mrs Jadranka Stanisic Trenevski, a nurse from the Serbian Colorectal Cancer Patient Association told us: “We soon realised in Serbia that it would be easier for patients and we would get more responses if we distributed paper surveys. We have printed and sent them to all centres where patients are being treated. I have called each of these centres and helped them with all the questions they had. Also, we have organized five meetings with patients where we have distributed the surveys."  We are hearing stories like this in all participating countries – thank you to everyone!  We are looking forward to having the results later this year and to start work with our groups to ACTION the changes needed to make life better for these patients.

In the meantime, if you would like to help us recruit patients for the survey please write to zorana@europacolon.com  To visit the survey page – which includes a full list of participating countries – please click here: www.europacolon.com/survey  

5)    Preparing for ECCAM 2018 – #Time4Change!

Back in 2008 EuropaColon established European Colorectal Cancer Awareness Month (ECCAM) during the month of March as an annual awareness raising initiative. 

There has been tremendous progress in that time but this year we want to take stock of how far we have come and what still needs to radically change. So we are asking ourselves and the wider colorectal cancer community, have we done enough? Enough awareness raising, enough lobbying for effective formal population screening or for equal access to treatment and care across Europe?

We have come a long way but a lot more needs to be done, which is why we believe it is #Time4Change!

Stay tuned for more information next month and in the meantime look out for our #ECCAM18 campaign #Time4Change.

14 December 2017

5 Things You Need to Know...

We reach the end of a transformative year for EuropaColon in which we have attained record membership, partner numbers and announced our expansion into digestive cancers – oesophageal, pancreatic and gastric. It is the perfect platform for an extremely productive 2018!

Highlights in November and December included:

  1. Making our partnership with surgeons a reality.
    To make a real difference in healthcare, partnerships are everything. We have been lucky enough to establish incredibly meaningful associations with almost every stakeholder involved in colorectal cancer – from health ministries and governments to clinicians, the media and, of course, patients. But to date, our work with surgeons has been limited. That has all changed this year, and in addition to working with the ESSO and ESCP we were invited to a surgical meeting at the Gemelli hospital in Rome where our CEO Jola Gore-Booth presented on the Power of Partnerships and had the opportunity to talk with several key surgeons – we look forward to working more closely with this vitally important stakeholder in the future. It was also announced that we would with the help of Professor D’Ugo and his colleagues and team be launching EuropaColon Italy in 2018. In addition, Jola was hugely honoured to be invited to witness laparoscopic surgery performed live by renowned surgeon Professor Gong from China. The skill was incredible to witness first-hand, and with this method, we know that patients can be out of hospital and getting on with their lives sooner than ever. We look forward to working with Professor D’Ugo in 2018.

  2. Sending a giant inflatable colon to Scotland! 
    EuropaColon working with Inflatable Body Organs (IBO) and their giant Inflatable Colon helped to raise awareness of colorectal cancer across the Western Isles of Scotland – five Isles in five days!!! The team was thrilled to be visited by Pudsey Bear in Stornoway - from the UK’s ‘Children in Need’ charity initiative – to help raise awareness about bowel screening.  Bowel screening uptake across the Western Isles has increased over time but still fewer than three out of five people take up the invitation to be screened. For approximately every 650 people invited for regular screening, one bowel cancer death will be prevented.

  3. Attending a major congress in digestive cancers.
    Jola Gore-Booth and our Director of Policy, Geoffrey Henning, attended the United European Gastroenterology (UEG) annual meeting in Barcelona. This is a key discipline in the management of digestive cancers and therefore an important meeting for us. In addition to meeting sponsors and our clinical supporters, Geoffrey was invited to present to the Health Stomach Initiative. He outlined our plans for oesophageal and gastric cancer including the forthcoming patient survey, our support for patients and carers initiative and a Heatmap to detail the issues and blocks to treatment and care. Look out for more information on all of this in 2018!

  4. Co-chairing the patient track of the Pancreatic Cancer Academy.  Pancreatic cancer is an area of significant unmet need and will become a major focus for us in the future. Taking place in Prague this year, the Pancreatic Cancer Academy meeting brought together clinicians, nurses and patient advocates for two days of information sharing. We left the meeting feeling very positive, with considerable support shown for greater interaction by the different groups to achieve more in this important area.

  5. Participating in a patient forum at ISPOR. Zorana Maravic, our Director of Group and Project Development, participated at the ISPOR Annual European Congress in Glasgow in November. Zorana took part at the 9th Patient Representative Roundtable organized by ISPOR and, with fifteen other patient representatives, joined other key stakeholders such as researchers, payers, decision makers, and health technology producers to discuss the evolution of patient involvement in HTA and the added value of real-world and patient-level data.

Finally, from all of us here at EuropaColon, we are wishing you a very happy and restful holiday season.

We look forward to sharing lots of exciting developments with you in 2018!

23 November 2017

5 Things You Need to Know...

October was probably the busiest months of our year so far, to the extent that it was hard to limit this article to just 5 things! But we just about managed! Here are the top 5 things you need to know…

1. Three years of work with the European Patient Forum’s Working Group on Access to Healthcare is drawing to a conclusion with the launch of the Roadmap due to take place in December. In October, we worked to finalise the Roadmap and plan for a meeting with the EU Parliament. We are very excited by the potential of the Roadmap to bring together patient groups and advocates across Europe to speak out with a single voice about access to treatment and care on the continent. Look out for more in December!

2. Following our announcement last month that we are expanding into digestive cancers, we have been busy developing our oesophageal and gastric cancer plans. One of our first major projects in the area will be a patient survey to identify key unmet needs; we start recruitment later this year.

3. We held a focus group in Munich to start planning for European Colorectal Cancer Awareness Month (ECCAM) in March 2018, and to discuss how we can raise awareness and best support colorectal cancer patients and carers. Some very creative ideas came out of this meeting, which we look forward to sharing soon in the lead up to ECCAM!

4. We attended a very energising meeting organised by Celgene who brought together over 100 patients and advocates with senior colleagues in their offices in Boudry, Switzerland.  It was an excellent opportunity to network with other patient stakeholders and have a constructive conversation with a key member of the pharma industry.

5. We participated in an ESMO training workshop for advocates on science. This gave us an excellent understanding of the Magnitude of Clinical Benefit Scale (MCBS), a standardised, generic, validated approach to stratify the magnitude of clinical benefit that can be anticipated from anti-cancer therapies. It will mean that comparisons between medicines can be more easily reached, helping us all to understand the treatment options better.

24 October 2017

5 Things you need to know...


September was a landmark month for all of us at EuropaColon. Read on to find out why…

5 Things You Need to Know - September

With our network and scope of activities continuing to expand we are delighted to introduce a new series of monthly digests to keep you up to date with all our latest news.

And what a month to start with!! From ESMO to ECCO, from Berlin to Brussels, September was a month full of productive meetings and exciting developments.

Firstly, we are delighted to announce that we are expanding into digestive cancers starting with pancreatic, oesophageal and gastric cancer. The project will be led by Geoffrey Henning who is currently our Policy Director and a Board Member of EuropaColon .This is a major milestone for our organisation and gives us a fantastic opportunity to put the spotlight on these cancers which are often under represented at all levels. Look out for more news on this soon.

The big congress in September was of course ESMO, this year held in Madrid and attended by an astonishing 23,000 people. For us the congress was a great success – a chance to meet with other patient organisations and healthcare professionals. Throughout many of the conversations we had there was a common thread – a real desire to do more for patients and to push it to the next level. For us it felt like a defining moment. We have built an incredible platform with the help of 43 groups in 32 countries – now is the moment to start generating the political will to invest better in colorectal and digestive cancers, to ensure all patients across Europe have access to at least the minimum recommended standards.

Other key highlights from the month include:Look out for the October 5 Things You Need to Know


  • Attending the European Society of Coloproctology (ESCP) Annual Conference which this year took place in Berlin. We had a very interesting exchange of views and ideas with the Research Committee Chair Professor Dion Morton and others and are excited about the prospect of working more closely with the ESCP and surgeons in general. We look forward to more fruitful conversations soon.
  • Attending and speaking at a meeting in Rome with Colomed, an organisation aimed at creating a network of clinical and research centres to integrate practices in Mediterranean countries. Our thanks to the Colomed team and Ann Zeuner for their hospitality and very interesting meeting - “Strengthening the Mediterranean Partnership in the Field of Public Health”
  • A meeting in Brussels where we started the process of re-registering EuropaColon in Belgium and where we began discussions on our new 10 year business plan. EuropaColon will be 15 years old in 2019 when we plan to launch our new strategy!
  • Two very productive meetings with ECCO (European CanCer Organisation). The first was a Patient Advisory Committee to assist with planning the next ECCO Summit/Conference in September 2018. The second was to contribute to the working party of Oesophageal / Gastric Cancer Essential Requirements of Cancer Care. While this is a new disease area for us we are working closely with the few patient groups in Europe to represent the views of patients on this committee. Publication is expected in early 2018. EuropaColon was represented on the first round of the Essential Requirements that included colorectal cancer, published in 2017.

With best wishes


Founder/CEO EuropaColon

19 December 2016

United European Gastroenterology 2016

On 6th December EuropaColon was in the audience for the United European Gastroenterology meeting in Brussels on Digestive Health.

A high level meeting with an agenda that brought the outgoing Slovak Council Presidency and the incoming Maltese Presidency to the table. Sandwiched between these speeches were a number of informative and enlightening presentations.

It was clear from the presentations and discussion that the issue with health funding remains short term. Consequently public health is being reduced and health systems are scaled back where ever possible. Despite the financial constraints there are basic health needs that require funding. Cutting public health (often down to less than 1% of health budget) affects delivery and adds to costs later in the pipeline.

We need to work out a compromise between these two and reconcile differences so that early diagnosis can be appreciated by all citizens across Europe.
Greater collaboration between relevant Government departments could bring about better understanding of the needs and the benefits of funding, such as screening or educational programs to reduce obesity amongst children. By not dealing with these matters up front the later costs escalate and soon will be out of control. Awareness of the benefits of healthy eating have been proven and in the words of one speakers; "Diet can do as much to heal the gut and statins" and clearly a lot cheaper.

The most dynamic presentation was from Petra Thomas who since her diagnosis at 30 of anal cancer has started an awareness organisation Red Pants, in Germany to raise awareness amongst the younger generation of this disease.

The Health Minister for Malta closed the meeting with their plans for the 6 months Presidency staring in January. The two topics appear to be relatively innocent but the detail gives this away.
1. Cross Border Health Care cooperation - how can this be made to work more effectively, also looking at pricing and access to medicines and joint procurement.
2. Childhood Obesity - having measured all children in Malta there is a 40% obesity rate. The will look at the EU plan on obesity and assess what is working and what not. Alongside they will develop a toolkit for purchasing good quality food for school meals, this 25bn annual budget can surely be better utilised to bring health food to the school table.

The meeting was a full day but with plenty of time for discussion a number of helpful projects were developed during the breaks.

07 November 2016

Pancreatic Cancer Awareness Month 2016

We are supporting Pancreatic Cancer Awareness Month this November! Turn it purple and see how you can get involved.

Click here to find out more.

25 October 2016

Highlights from ESMO II

Because of grants from the organisers of the ESMO Congress, 8 of our Expert Patient Advisory Group (EPAG) were able to attend the recent European Society of Medical Oncology meeting in Copenhagen. Barbara, Mark, Dora, Wolfram, Jolien, Celeste and Anthony all received a grant as patient advocates.

They used the time well and attend a wide range of presentations both in the clinical track and also the patient track. These were all designed to information and empower patient advocates to understand the complex world of cancer treatment, care and most importantly access.

On the Monday we all joined up for a special meeting of the EPAG to develop our own agenda and discuss plans for a new supportive website that will help patients negotiate the often complex world following a diagnosis. The website still needs funding but the idea of this meeting was to start the discussion and make sure we were all on the same page.

Exciting times!!

05 October 2016

Global Perspectives on Optimising the Clinician-Patient Interface

Zorana Maravic, Director of Group and Project Development at EuropaColon, together with her colleague, Michael Sapiens from Colon Cancer Alliance, Dr John Marshall, and Dr Dirk Arnold, have participated in Medscape program titled Global Perspectives on Optimising the Clinician-Patient Interface.

Click here to watch it.

22 September 2016

Joint Action on Cancer, CANCON

The second Joint Action on cancer, CANCON, an EU funded initiative, is coming to a close and was the host at a stakeholders meeting last week. The report and policy recommendations on the Joint Action will be published in January with a final conference in February. Over two days last week we were given an update from work package leaders on progress and the outcomes being drawn into the final report.

The areas this Joint Action covered were agreed in consultation with Member States, these were Screening; Survivorship and Rehabilitation; Integrated Cancer Control and Community Level Cancer Care.

EuropaColon was asked to make a presentation reviewing the work being done – all interesting activity and some very exciting. Perhaps the greatest impact for patients will be the recommendation that everyone at point of diagnosis should receive a Survivorship Care Plan. This will be updated regularly during the patient experience to provide support beyond the clinical experience.

In addition to the work packages, an important element will be work looking at the inequalities that exist between Member States. Currently there is an 8 year difference between the best and worse performing countries and this is seldom the consequence of the amount of money spent on cancer per capita in the country.

The second day was a meeting of the Italian Cancer League and it was interesting to see the passion and enthusiasm that local MPs and MEPs have for cancer care.

In all, the two days presented a good opportunity to exchange views and hear new thoughts on options for delivering improvements in cancer care across Europe.

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