European Reference Networks for Rare Urological Diseases (eUROGEN)
Orchid is working closely 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 and two penile cancer advocates have helped produce a Patient Journey (below) and a Webinar.
They also attended the European Association of Urology (EAU) Annual Congress 2022 in Amsterdam where they gave a talk about the current unmet needs in penile cancer while Orchid Nurse Rob Cornes gave a talk at the EAU congress 2023 in Milan on the importance of communication in rare diseases.
Both penile cancer advocates have also been involved in updating the current EAU Guidelines for penile cancer, a huge achievement, providing a much better recognition of the long-term issues which men may experience as a result of treatment and the need to expand the support which is currently available. The Guidelines can be viewed here.
A video discussing the impact of these guidelines can be found here
eUROGEN are also currently funding the production of several Orchid videos which will highlight some of these issues with an emphasis on awareness of penile cancer for the general public, awareness for primary care (GPs) and an animated guide for men newly diagnosed with penile cancer. This will provide an overview of potential treatment for the EAU patient information website. Orchid are also hoping to create a unique penile cancer guide for allied HCPs based on patient testimony and experience which can be used by non-speciliasts to gain a comprehensive insight into common issues men may experience during or after treatment to help support them.
EAU Patient Advocacy Group
Orchid Nurse Specialist Rob Cornes is also honoured to be representing penile and testicular cancer advocacy for the EAU Patient Advocacy Group.
The aim of this group is to create an open channel for the EAU to engage with member organisations and for member organisations to be able to voice the collective needs and interests of their patient community. This is done through a platform wherein patient advocates are encouraged to express the patients’ needs regarding education and address areas of awareness, as well as bring into focus and identify specific issues or projects. The EPAG group is a collective of specifically chosen HCPs from various disciplines and medical backgrounds together with various patient advocate groups. EPAG is accommodated and facilitated through EAU Patient Information, a section within the EAU involved in urology patient information and education.
Rob gave two talks for the EPAG at the EAU Congress 2023 in Milan and took part in two panel sessions.