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 is focused on educating, raising awareness, and making sure that bladder cancer is no longer a forgotten disease. Throughout the month of May we share facts, statistics, risk factors and symptoms on social media to raise the profile of bladder cancer.
Social Media ToolkitThe 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.
The European Cancer Patient Coalition hosted a very successful Thundeclap Campaign in May 2017, with a social reach of 336,262.
Bubbles for Bladder CancerBubbles 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.
Help get Bladder Cancer heard by using #BladderCancer and re-tweeting supportive and informative messages.
At noon on the last Sunday in May we encourage everyone to join the international social media community by sharing pictures of themselves blowing bubbles using the hashtag #BubblesforBladderCancer.
Join your local patient organisation
Australia: Bladder Cancer Australia
Belgium: NeoVida Vlaanderen (NeoBladder Flanders)
Canada: Bladder Cancer Canada
Finland: Syöpäjärjestöt (Finland Cancer Society)
France: Les Zuros: cancer de la vessie (bladder cancer support group)
Germany: BlasenKrebs (Bladder Cancer)
Greece: Ελληνική Ομοσπονδία Καρκίνου (Hellenic Cancer Federation)
Italy: Pazienti Liberi dalle Neoplasie Uroteliali (People free from bladder cancer)
Netherlands: Leven met blaas- of nierkanker (Living with bladder or kidney cancer)
Norway: Blærekreftforeningen (Bladder Cancer Society)
Poland: Polska Koalicja Pacjentów Onkologicznych (Polish Coalition of People with Cancer) and Let’s Win Health Foundation
Spain: Grupo Español de Pacientes con Cáncer (Spanish Group of People with Cancer)
Turkey: Kanser Savascilari (Cancer Survivors Organisation)
UK: Fight Bladder Cancer and Action Bladder Cancer
USA: Bladder Cancer Advocacy Network
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% 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 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.
European Cancer Patient Coalition White Paper on Bladder Cancer (English)
European Cancer Patient Coalition White Paper on Bladder Cancer (Italian)
European Cancer Patient Coalition White Paper on Bladder Cancer (Turkish)
Join our Bladder Cancer Working GroupIn 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 has established a Bladder Cancer Working Group to guarantee that bladder cancer patients and patient organisations will be able to contribute to our bladder cancer activities.
- 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.
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.
ActivitiesThe Bladder Cancer Working Group will be responsible for:
- 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 Chair of the Working Group is Andrew Winterbottom, ECPC Board member and Treasurer. Andrew is a bladder cancer patient, as well as the founder and director of Fight Bladder Cancer.
- 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 may also meet 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.
- The first meeting was on Friday 16 June 2016, marking the beginning of the ECPC Annual Congress.
ECPC will offer reasonable financial assistance for travel and accommodation to attend the meeting at the ECPC Annual Congress.
The ECPC Working Group on Bladder Cancer created a survey for bladder cancer patients and caregivers.
We encourage bladder cancer patients, and those who assist them, to please take the survey, which is available in multiple European languages. Collecting experiences of bladder cancer patients and carers is crucial in order to learn more about this deadly disease, and responses will help other people affected by bladder cancer.
Find the links to the Survey on Bladder Cancer Patient Experience translated in multiple European languages below:
English: Bladder Cancer Patient Experience Survey
French: Questionnaire sur le Vécu des Patients atteints de Cancer de la Vessie
Finnish: Kysely Virtsarakon Syöpää Sairastavien Potilaiden Kokemuksista
Greek: Έρευνα ασθενών με καρκίνο της ουροδόχου κύστης
Italian: Sondaggio sull'Esperienza dei Pazienti con Cancro della Vescica
Norwegian: Spørreundersøkelse om Erfaringer for Blærekreftpasienter
Spanish: Cuestionario de la Experiencia del Paciente en el Cáncer de Vejiga
The European Cancer Patient Coalition’s bladder cancer activities are supported by: