Collaborative initiatives

In the UK around 760 men are diagnosed each year with penile cancer compared to over 60,000 with prostate cancer. This means that obtaining funding and support within the UK for penile cancer initiatives is limited due to its rarity and a lack of knowledge about its impact.

However each year round 7,600 men will be diagnosed with penile cancer in Europe and 36,000 globally and there are a number of global organisations also seeking to improve the support and long-term well-being for those affected by the disease. Over the last five years Orchid has been working with them to create change at a European and global level which will also have an impact in the UK.

European Association of Urology (EAU) Patient Advocacy Group (EPAG)

The EAU is a network of 19,000 urologists working throughout Europe. The EAU trains and educates urologists including junior clinicians, facilitates research and learning through conferences and education programmes as well as produces European Guidelines on the best recommended treatments for urological conditions including penile cancer.

The EAU Patient Office is a department within the EAU which promotes the voice of patients in everything the EAU does. This includes facilitating a pan European group of organisations and charities who promote patient advocacy (EPAG). Orchid Nurse Specialist Rob Cornes is member of the group representing penile and testicular cancer advocacy. The group is dedicated to involving patients, in the decision making process, helping shape future recommendations and improving the quality of care.

Each year the EAU hold the largest urology conference in Europe and the Patient Office facilitates a whole day of patient centred round tables and debates. Orchid Nurse Rob was tasked with organising two penile cancer round tables involving patient advocates and clinicians. The first in 2024 discussed quality of life for while the most recent in 2026 a concentrated on the psychosexual well-being of patients following treatment and how best to support them. One outcome of the 2022 conference was the creation and distribution of a patient led survey by patient advocate John Osborne, supported by Orchid, and the EAU Patient Office.

Rob has also previously delivered several talks at the conference. In addition along with the Patient Office and several European clinicians, Rob scripted and helped develop an animated video about penile cancer. An English and Spanish version of this video have now been viewed around 250,000 times.

Rob is currently working with the EAU Patient Office on several projects which will help improve the quality of life for penile cancer patients.

In 2026 Rob was awarded the prestigious EAU Medal of Excellence for Patient Advocacy, one of only 5 recipients of this award.

European Reference Networks for Rare Urological Diseases (eUROGEN)

Orchid is working with eUROGEN a European orginisation dedicated to improving the outcomes for rare urological conditions by enabling equitable access to diagnosis, treatment and care for patients across Europe. Orchid Nurse Specialist Rob Cornes is a member of the Work-stream 3 Patient Advocacy Group (ePAG) for penile and testicular cancer.

Rob and two penile cancer advocates have helped produce a Patient Journey (below).

Since 2022 Rob has also given talks about penile and testicular cancer on behalf of eUROGEN several European Association of Urology Congresses.

Global Society of Rare Genito-Urinary Diseases (GSRGT)

This orginisation provides research and education for clinicians and patients about rare cancers such as testicular and penile cancer. Orchid Nurse Rob is honoured to be the co-chair of patient advocacy for the GSRGT and is currently working with their team to produce peer reviewed patient information on penile cancer which can be used by patients globally.

Get involved

As Orchid works with more organisations, it is becoming clear that there are many clinicians and health care professionals who want to improve education and support for penile cancer patients.

Much of this work will need the real life experience and input from penile cancer survivors and advocates. particularly men and their partners. For instance research projects will often need a core team of advocates to meet virtually and help guide and shape the information being produced, to make sure it is relevant and easily understood.

Orchid is extremely proud to be working with a number of men who have been affected by penile cancer and who are providing advocacy and support to the general public and allied Health Care Professionals. To read more about their work please click here

If you would like to learn more about ongoing or upcoming projects or be part of a focus group please email robert.cornes@orchid-cancer.org.uk

Reviewed August 2026