Start-up guide for bladder cancer patient groups

There are so many things to consider when establishing a bladder cancer patient group, and it can be difficult to know where to start. Recognising this, we have developed a start-up guide for bladder cancer patient groups – a tool and a resource for anyone with ambitions to start a bladder cancer patient group in their country.

Our members have considered their own experiences in starting bladder cancer groups, and we have combined our collective knowledge for you in this guide.

We hope that this guide allows us to:

  • Promote the establishment of bladder cancer patient groups in different countries
  • Provide pre-made resources and share best-practice examples for getting started
  • Inform, support and create unity among bladder cancer patient groups
  • Grow the global community of bladder cancer patient groups

Supporting you on your journey

Our vision is that there is a national bladder cancer patient organisation in each country. It is an ambitious plan and it is people like you who can help make that happen! This toolkit is here to guide you with the first steps.

We want to make sure that national bladder cancer patient support groups and organisations are strong enough to support people affected by bladder cancer, enhance awareness and advocate for better diagnosis, access and care. We are here to provide guidance, support and a helping hand to aid your work in your country to make a difference.

Inspirational case studies from our members

We have gathered inspiration case studies from our member organisations to showcase the work that they have done around the world. We hope this will help to stimulate ideas about the kind of activities you can organise.

When I was diagnosed with Bladder Cancer in late 2011, I was given a booklet with information about what I should know about this disease. It was good, but very basic so I turned to the internet for more information. I found some great resources online available for free in other countries like the UK, USA and Canada; however, Australian resources were virtually non-existent. The big things missing were information and statistics on recovery, continence, and erectile dysfunction – a reality for people who have had bladder cancer surgery.

Read the full story in the start-up guide

Bladder-Cancer-Patient-Guidebook-Australia

In May 2019, Association Les Zuros developed an awareness poster
about the signs and symptoms of bladder cancer, considering the surprising lack of awareness around bladder cancer compared to other common cancers in France.

Members volunteered to help develop the poster, and a small working group was created to manage the development and drafting of the awareness poster. Feedback was received on drafts from the larger membership, and once we had a final version, we also sense checked the content with our supporting urologists to ensure that our poster was scientifically sound.

Read the full story in the start-up guide

Les-Zuros-Bladder-Cancer-Awareness-Poster

Each year at Bladder Cancer Canada (BCC) we organise a country-wide awareness raising walk for bladder cancer.

Awareness walks are widely adopted by patient charities and they serve to bring people associated with the particular disease together; to encourage walkers to raise funds by collecting donations from family, friends and colleagues; and to raise awareness about the disease through media publicity about the walk and presence of walkers in the streets and parks.

Read the full story in the start-up guide

Bladder-Cancer-Canada-Awareness-Walk

Fight Bladder Cancer UK started from a very personal battle. Andrew, one
of our founders, was diagnosed with a Stage 4, G3 bladder cancer in summer 2009. He had been experiencing symptoms for over 18 months but was misdiagnosed with an enlarged prostate. Faced with a poor prognosis and immediate life-changing surgery, Andrew and his wife T made contact with
a fellow bladder cancer patient and his partner who had recently undergone the same treatment.

Just being able to talk to someone else who really understood what they were both going through helped them immensely. It also helped that the two carers could chat about what could be expected during surgery and recovery.

Read the full story in the start-up guide

Fight-Bladder-Cancer-Awareness-Lydia-Makaroff-Andrew-Winterbottom

Download

Start-up guide for bladder cancer patient groups Download
Bladder Cancer Facts Infographic Download

Further inspiration

Our ambition to have a strong bladder cancer patient organisation in every country would not be possible without people like you. Watch the videos below to learn why we have developed the Start-up guide for bladder cancer patient groups and why we need strong patient advocacy and support more than ever before.