The ERN eUROGEN Coordination team was honoured to participate in the prestigious annual European Association of Urology congress, held in Paris from 5-8 April 2024.
Against the backdrop of the romantic city, our delegation engaged in enlightening discussions, shared cutting-edge research, and fostered collaborative endeavours with esteemed colleagues from around the world through an information booth in the exhibition centre, a thematic session, and involvement in two EAU Patient Office roundtables.
Thematic Session
ERN eUROGEN’s Thematic Session, held on 5 April 2024, focused on providing an update on rare and complex urology. The session shed light on diverse patient challenges and showcased the latest advancements in diagnosis and management.
The session commenced with Rob Cornes (London, GB) sharing insights into testicular and penile cancer support from the patient’s viewpoint. This was followed by Anna De Santis (Rome, IT), who delved into the complexities of interstitial cystitis and its profound impact on mental health.
The session took a collaborative turn as these two ERN eUROGEN ePAG members and experts engaged in lively discussions about future perspectives and patient expectation management, underscoring the importance of a holistic approach to healthcare.
The subsequent presentations addressed rare congenital uro-recto-genital anomalies and functional uro-recto-genital conditions requiring highly specialised surgery. Experts such as Alaa El-Ghoneimi (Paris, FR), Alessandro Morlacco (Padova, IT), and Felix Campos Juanatey from Santander, ES, presented their expertise on urethral duplications, long-term care in posterior hypospadias, and post-hypospadias urethral strictures, respectively.
Mariangela Mancini (Padova, IT) and Yue Che (Düsseldorf, DE) led presentations on urethral stenosis in women and sentinel lymph node staging in testicular cancer patients, respectively.
The session concluded with a practical takeaway message highlighting the innovative approaches and strategies in rare urology and the collaborative efforts needed to effectively address these conditions in real-world healthcare settings.
Patient Office Roundtables
ERN eUROGEN participants were also involved in two roundtables organised by the EAU Patient Office on 5 April 2024.
The first, “Penile cancer: The importance of partnering with patients in procuring data”, provided a comprehensive platform to address critical aspects of penile cancer management.
The discussion aimed to anticipate unmet needs in long-term survivorship, considering the unique psychological, psychosocial, and psychosexual impacts of the disease. Participants delved into maintaining best practices in treatment decisions, particularly when patients opt for less invasive approaches.
The session underscored the vital collaboration between healthcare professionals and patients in advancing research and improving outcomes in penile cancer care. Indeed, ERN eUROGEN’s ePAG members are now compiling a survey for patients with penile cancer, which the network will help facilitate.
The second roundtable on “Inflammatory bladder diseases” provided a vital platform for addressing the burden and lack of guidelines surrounding conditions such as BPS/IC, chronic radiation-induced cystitis, and ketamine-induced cystitis.
This roundtable shed light on the experiences of patients and the complexities in healthcare management for these underdiagnosed and often sub-optimally treated conditions and emphasised the collaborative efforts needed to address the unmet needs of patients with inflammatory bladder diseases, such as the forthcoming ERN eUROGEN Clinical Practice Guidelines on these diseases.
Conclusions
Overall, this year’s annual European Association of Urology congress served as a pivotal platform for exchanging insights and advancing the frontiers of rare urological care, reaffirming our commitment to enhancing patient outcomes and promoting excellence in the field.
Our presence at this esteemed gathering underscored our dedication to forging synergies within the European urological community. The network is continuing its tireless efforts to confront the challenges of rare uro-recto-genital diseases and complex conditions with innovation and solidarity.
