Bladder Cancer Awareness Month

Bladder Cancer Policy Paper

Bladder Cancer Working Group


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 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 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.

Twibbon Campaign

Show your support for Bladder Cancer throughout the month of May by adding Bubbles to your Twitter or Facebook profile picture using this Twibbon.

Thunderclap Campaign

The European Cancer Patient Coalition hosted a very successful Thundeclap Campaign in May 2017, with a social reach of 336,262.

Bubbles for 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. 

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.

Bubbles for bladder cancer

Join your local patient organisation


Australia: Bladder Cancer Australia
Canada: Bladder Cancer Canada
Finland: Syöpäjärjestöt
Germany: BlasenKrebs
Greece: ELL.O.K. (Ελληνική Ομοσπονδία Καρκίνου)
Italy: Pazienti Liberi dalle Neoplasie Uroteliali
Netherlands: Leven met blaas- of nierkanker
Norway: Blærekreftforeningen
Poland: Polska Koalicja Pacjentów Onkologicznych and Let’s Win Health Foundation
Romania: This email address is being protected from spambots. You need JavaScript enabled to view it.
Spain: Grupo Español de Pacientes con Cáncer
Turkey: Cancer Survivors Organisation
UK: Fight Bladder Cancer and Action Bladder Cancer
USA: Bladder Cancer Advocacy Network

 

 


Bladder Cancer White Paper

Bladder Cancer White Paper

 

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) 

 


Working Group on Bladder Cancer

 

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 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.

How to join the Working Group

We strongly encourage bladder cancer organisations, as well as ECPC Members and non-member general cancer patient organisations supporting also bladder cancer patients to become a member. You may contact This email address is being protected from spambots. You need JavaScript enabled to view it. by email stating:
  • 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. 

Objectives

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.

Activities

The 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.

     


    Support

    The European Cancer Patient Coalition’s bladder cancer activities are supported by:

     

                                       

    AstraZeneca                                                          Ipsen                                                            Roche
    www.astrazeneca.com                                                            www.ipsen.com                                                           www.roche.com 
                                                                                                                                                                                             www.wecarecampaign.org 
                                                                                                                                                                                             www.wecarecampaigngame.org