Bladder Cancer Advocacy Activities
I. Bladder Cancer Awareness Month
The month of May is bladder cancer awareness month. Bladder cancer is the fifth most common cancer in the Western world and the second most frequent malignancy of the urinary tract after prostate cancer. With more than 175,000 people being diagnosed with bladder cancer in Europe each year, more work needs to be done to reduce the burden of bladder cancer on patients. Based on such disturbing statistics and even more alarming prognosis, the bladder cancer awareness campaign will be focused on educating, raising awareness, and making sure that bladder cancer is no longer a forgotten disease. Throughout the month of May we will be sharing facts, statistics, risk factors and symptoms on social media to raise the profile of bladder cancer.
Bubbles for Bladder Cancer was an initiative started by Fight Bladder Cancer. Bubbles are a beautiful and poignant reminder of those who have lost their fight with this awful disease and used throughout this campaign to symbolise standing together with those currently undergoing treatment and everyone who is affected by bladder cancer.
The European Cancer Patient Coalition has also published a Policy Paper on Bladder Cancer, which is currently available in English, Turkish, and Italian (scroll down for more information).
Resources to help you get involved:
I. Social Media Toolkit
The European Cancer Patient Coalition has created a social media toolkit to help organisations, supporters and allies coordinate activities to maximise the power of social media. It contains useful guidance and tools including inspiration on what to post and explanations on relevant tools and suggested activities.
Show your support for Bladder Cancer throughout the month of May by adding Bubbles to your Twitter or Facebook profile picture using this Twibbon.
Commit to spreading a synchronised message promoting awareness at the end of May by joining ECPC’s social media Thunderclap on Facebook and Twitter.
Join the Conversation!
Help get Bladder Cancer heard by using #BladderCancer and re-tweeting supportive and informative messages.
On 28th May 2017 at midday we encourage everyone to join the international community flooding social media by tweeting pictures of themselves blowing bubbles using the hashtag #BubblesforBladderCancer.
If you live in Brussels you can join the European Cancer Patient Coalition team in Place Luxembourg at 12 noon on Monday 29th May 2017 to blow bubbles in the air and unite in the fight against bladder cancer.
If you don’t live in Brussels, you may wish to host your own local awareness event.
II. Bladder Cancer Working Group (scroll down for more information)
In order to better represent the bladder cancer patient community, ECPC counts on the expertise and collaboration of bladder cancer patient organisations all over Europe. ECPC is establishing a Bladder Cancer Working Groupto guarantee that bladder cancer patients and patient organisations will be able to contribute to our bladder cancer activities. We invite all bladder cancer patient organisations and ECPC Members with an interest in bladder cancer to express their interest in joining the Bladder Cancer Working Group, details on how to do so can be found here.
III. Join your local patient organisation
Canada: Bladder Cancer Canada
Netherlands: Living With Bladder or Kidney Cancer
Norway: Blærekreft Norge
Poland: Polish Cancer Patient Coalition
UK: Fight Bladder Cancer or Action Bladder Cancer
USA: Bladder Cancer Advocacy Network
The European Cancer Patient Coalition’s bladder cancer awareness month activities are supported by:
II. Bladder Cancer White Paper
ECPC wants to contribute to raise awareness about bladder cancer. The White Paper launched in April 2016 is an appeal to policy makers, the scientific and medical community to reduce the burden of bladder cancer on patients.
Rationale of the initiative
The idea of this initiative came from ECPC member organization PaLiNUro from Italy that contacted us in 2015 signaling that “while information and patient support is far advanced in many solid tumours, it is still lacking for bladder cancer”. They also suggested ECPC that “a strategy aimed at joining efforts under a common platform would bring advances in the field”. It was PaLiNUro making a research identifying the active patient groups in Europe and it was still PaLiNUro that put us in touch with Andrew Winterbottom, Founder and Director of Fight Bladder Cancer UK that became the coordinator of ECPC activities devoted to bladder cancer. ECPC will always react to such proposals coming from our member organisations especially as this falls within ECPC's strategic goal to provide underrepresented cancer patients across Europe with reference information regarding their condition and to potentiate the capacity of larger national ECPC member to provide support.
EU involvement on bladder cancer
The EU has been quite ambitious in supporting EU Member States in the development of cancer screening programmes supplemented with guidelines for breast, cervical and colorectal cancer. However, not all cancers have been treated equally, and bladder cancer is actually the 5th most common cancer in the western world and the 2nd most frequent malignancy of the urinary tract after prostate cancer. Despite a prevalence for both sexes of 13, 07 % in the EU27 with figures from 2012 (IARC), bladder cancer is highly overlooked by decision-makers and the pharmaceutical industry, despite its high prevalence. Moreover, it results in serious morbidity and mortality. Bladder cancer is also a very heterogeneous disease rending research efforts to characterize it very complex and current research funding is insufficient. Health remains a national competence but European coordination in the fight against cancer has shown its added value and much more can be achieved through coordinated activities.
The paper below aims to raise the profile of the disease in Europe by describing the various treatment, prevention and diagnosis solutions and guidelines, tackling the disease’s challenges and threats and delineating novel opportunities, in the hope to raise awareness, better educate policymakers and fine-tune bladder cancer policies in the interest of current and future patients and the society in general.
ECPC Paper on Bladder Cancer can be read by clicking here.
The pdf is interactive, feel free to click on menu to the left to navigate through the paper.
Launch of the paper on the 20 of April 2016
Click on each presentation to download it
Click here for all the pictures of the Bladder event.
ECPC Expert Group on Bladder Cancer that worked on the White Paper is composed of:
Bladder cancer experts (in alphabetical order):
- Dr Joaquim Bellmunt, Cancer Institute - Hospital Universitari Dexeus Quiron Group with the direction of the Bladder Cancer Center at DFCI and Dana-Farber/Brigham and Women's Cancer Center, Harvard University, Boston, USA. Cooperates with the Oncology Department at the Hospital del Mar and the European Association for Research and Treatment of Cancer (EORTC);
- Dr Petros Grivas, Hematology and Oncology, Cleveland Clinic Main Campus;
- Dr Andrea Necchi, medical oncologist at the Fondazione IRCCS Istituto Nazionale dei Tumori in Milan;
- Tom Powles, Lead for solid tumor research at Barts Cancer Institute (BCI); Lead for the genitourinary (GU) cancer group at BCI, United Kingdom.
Urologists (in alphabetical order)
- Colin P Dinney, Urology, Cancer Center Support Grant (CCSG) Programs, University of Texas, United States;
- Neal Fleshner, Head of Division of Urology, Princess Margaret Hospital, University Health Network; Chair of Urology, Department of Surgery, University of Toronto ;
- Dr Nuria Malatts, scientist, Centro Nacional de Investigaciones Oncológicas; Member of the Scientific Board of the European Society of Urological Research (ESUR) and the European Association of Urology Research Foundation;
- Seth Paul Lerner, Urology, Baylor College of Medicine, Houston, United States; Beth and Dave Swalm Chair in Urologic Oncology, Director of Urologic Oncology; Director of the Multidisciplinary Bladder Cancer Program; Faculty Group Practice Medical Director;
- Dr Luis Martinez-Piñeiro Lorenzo, Urology, Chairman, Urology Unit, Hospital Infanta Sofia, Madrid, Spain ;
- Alexandra Masson- Lecomte, Urology, Henri Mondor de Crétei, France ;
- Bas Van Rhijn, Urology, Netherlands Cancer Institute, The Netherlands;
- Prof Dr Morgan Roupret, Chirurgien, Hôpital Pitié-Salpétrière, Université Paris 6 ;Professor, Faculté de Médecine Pierre et Marie Curie, University Paris 6, France ;
- Prof Shahrokh Shariat, Professor and Chairman, Department of Urology Comprehensive Cancer Center, Medical University Vienna, General Hospital, Austria;
- Prof Dr Arnulf Stenzl, Klinik und Poliklinik für Urologie, Universitätsklinik Tübingen, Germany.
Patient organisations dealing with bladder cancer in Europe:
UK Fight Bladder Cancer
Andrew Winterbottom Founder and Director www.fightbladdercancer.co.uk
Action Bladder Cancer UK
The initiative was funded by a grant from IPSEN and ROCHE. However, the content was not influenced by its funders, with ECPC maintaining full editorial control.
III. Working Group on Bladder Cancer (WGBC)
Join our Bladder Cancer Working Group
In order to better represent the bladder cancer patient community, ECPC counts on the expertise and collaboration of bladder cancer patient organisations all over Europe. ECPC is establishinga Bladder Cancer Working Group to guarantee that bladder cancer patients and patient organisations will be able to contribute to our bladder cancer activities.
How to join the Working Group
We invite all bladder cancer patient organisations and ECPC Members with an interest in bladder cancer to express their interest in joining the Bladder Cancer Working Group until the 20th of March 2017.
- Your name and function
- Your interest to join and the reason why you want to be involved
- The name and contact details of your organisation
You will receive a confirmation email shortly after your application has been submitted.
Working Group on Bladder Cancer
The key objective of the Bladder Cancer Working Group is to give ECPC Members and non-members with an interest in bladder cancer the opportunity to formally and directly contribute and collaborate in our bladder cancer work.
Bladder Cancer Working Group members will also have the opportunity to use the platform to decide on further topics for discussion of interest to Bladder Cancer patients. The aim of the Bladder Cancer Working Group is to provide its members and all ECPC Members with a practical and effective instrument to react to the European and national policy challenges related to bladder cancer.
In 2017, the Bladder Cancer Working Group will be responsible for:
- Agreeing on the vision for the group, main messages and policy asks
- Agreeing on the Terms of Reference for the group
- Providing input on the bladder cancer patient experience survey
- Providing input on ECPC activities during Bladder Cancer Awareness Campaign in May
- Providing input on ECPC policy and patient education webpages on bladder cancer
- Ensuring that ECPC bladder cancer activities promote full patient engagement and empowerment
- Contributing to the dissemination of patient information on bladder cancer both at national and European levels
Organisation and Composition of the Working Group
- Every ECPC Member (Full and Associate) and non-members active in bladder cancer can join the working group.
- The working group will have two Chairs. The Chairs will be responsible for moderating and involving everyone in the discussions and guiding the work of the Bladder Cancer Working Group.
- Andrew Winterbottom, ECPC Board member and Treasurer will be one of the Chairs of the Bladder Cancer Working Group. Andrew is a bladder cancer patient, as well as the founder and director of Fight Bladder Cancer.
- Once the working group has been established, the Bladder Cancer Working Group members will vote for the other Chair among the Bladder Cancer Working Group members. The Bladder Cancer Working Group members will agree on rules to run the Bladder Cancer Working Group (Terms of Reference).
- The Bladder Cancer Working Group will meet in person once a year in a dedicated meeting preceding the ECPC Annual Meeting. The Bladder Cancer Working Group will also meet at least twice a year via teleconference.
- The Bladder Cancer Working Group members, or appointed representatives, can be involved by ECPC in other ad-hoc initiatives, when necessary.
- ECPC will ensure the dissemination of the activities of the Bladder Cancer Working Group, including all the documents approved by the Bladder Cancer Working Group.
- ECPC will offer administrative and policy formulation support to the Bladder Cancer Working Group.
- ECPC will provide a private online interaction platform for working group discussions.
- ECPC will display the Bladder Cancer Working Group members on a dedicated website page.
- The first meeting will be on Friday 16 June 2016, marking the beginning of the ECPC Annual Meeting.
- ECPC will offer reasonable financial assistance for travel and accommodation to attend this meeting.