A Call to Urologists: Sign the HLM Rare Declaration

An estimated 30–36 million people in the European Union are affected by a rare disease, yet patients continue to face fragmented care, delayed diagnosis, and unequal access to treatment across Member States. In December 2025, the first High-Level Meeting on Rare and Complex Diseases (HLM Rare) brought together patients, clinicians, European Reference Networks (ERNs), policymakers, and industry to discuss this challenge.

The key outcome was the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases; a shared commitment built around eight priority actions, including: prioritizing an EU Action Plan on rare diseases; ring-fencing ERN funding in the next Multiannual Financial Framework (2028–2034); accelerating equitable access to diagnostics and orphan therapies; and strengthening the ERNs as the foundation of a pan-European care ecosystem. It is a call for the EU to move beyond fragmented, short-term efforts and build something durable for patients today and in the future.

The ERNs are central to this vision. Established by the European Commission in 2017 to ensure that patients with rare conditions anywhere in Europe can access the best available expertise, they are now at a pivotal moment: with the current funding period ending in 2027, political commitment to their continuation has never been more important.

ERN eUROGEN, the European Reference Network for Rare Uro-Recto-Genital Diseases and Complex Conditions, has been closely linked to the EAU since its earliest days. The first discussions about developing a urological ERN took place at the EAU Congress in Madrid in 2015, and it was the EAU Secretary General at the time, Prof. Christopher Chapple, who recognized the opportunity and drove the network's formation.

ERN eUROGEN received its official EC approval at the ERN inauguration conference in Vilnius in 2017 and has been coordinated by Radboudumc in the Netherlands since 2019. Today, the network spans 20 countries and 56 healthcare providers, working together to improve care for patients with rare uro-recto-genital conditions from infancy through to adulthood.

Under the current coordination of Prof. Peter Mulders at Radboudumc, the EAU remains a vital partner in that mission, from joint clinical practice guidelines to collaborating on public awareness campaigns such as "An Urge to Act" on urinary incontinence.