Bladder Cancer Awareness Month

White Paper on Bladder Cancer

Bladder Cancer Working Group

Bladder Cancer Multilingual Survey

 


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.

Join Bladder Cancer Awareness Month 2018 and help us to raise awareness on the fifth most common cancer!

Click here and download our toolkit and become a part of this important efforts

 

 



 

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: Community Health Romania
Spain: Grupo Español de Pacientes con Cáncer
Turkey: Cancer Survivors Organisation
UK: Fight Bladder Cancer and Action Bladder Cancer
USA: Bladder Cancer Advocacy Network


White Paper on Bladder Cancer

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) 

 


Bladder Cancer Working Group

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.

 


 Bladder Cancer Multilingual Survey

https://i.imgur.com/Z92AoFC.jpg

 

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


Support

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

                     https://i.imgur.com/UFwW5V0.png           

AstraZeneca                                                    Ipsen                                                   Roche                                           Bristol-Myers Squibb

www.astrazeneca.com                                  www.ipsen.com                                  www.roche.com                          www.bms.com

www.wecarecampaign.org 

www.wecarecampaigngame.org