At the start of November, we welcomed Darren Shilhan, our new Lead IT and Data Performance Analyst, to the eUROGEN office team.  Darren has written a beautiful introduction to himself, which you can read on the eUROGEN website. “As...

Serena Bartezzati (eUROGEN EPAG representative) attended the conference in Brussels from 21-22 November and has kindly provided us with a patient’s perspective both on the meeting and on the progress of the ERNs to-date. “The ERN conference held from...

Health professionals, researchers, patient organisations and policymakers gathered in Brussels on 21 & 22 November for the 4th European Reference Networks Conference. The well-attended and lively event featured two full days of presentations and debate, driven by plenary sessions and eight...

The International Children’s Continence Society (ICCS) 2018 Annual Meeting was held in Rome from 26-29 September and covered almost all areas relevant to the pediatric urinary tract and its malfunction.  Wout Feitz (Workstream 3 Lead) and Serena Bartezzati (EPAG...

Rare diseases are a major challenge that requires integrated and collaborative efforts from a wide range of stakeholders. To take rare disease collaborative research in Europe to the next level and support achievement of the IRDiRC 2027 goals, the...

The results of the INNOVCare Project (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) were announced at the final project conference in Brussels on 5 September, to 80 participants from 18 countries across all stakeholders. The results demonstrate the...

From 13-14 September, the ePAG Steering Committee met in Brussels, with Dalia Aminoff and Serena Bartezzati representing eUROGEN. Birute Tumiene, a geneticist from Vilnius University Hospital Santaros Klinikos, and Representative of Lithuania in the ERN Board of Member States...

New call for proposals A new call for ERNs to apply to the Connecting European Facilities Fund (CEF) was published on 28 June 2018, with a submission deadline of 22 September 2018.  The grant will fund activities related to...

Genetic Alliance UK (the national charity alliance of over 200 patient organisations working to improve the lives of patients and families affected by all types of genetic conditions) held an event at the Houses of Parliament, London, on 9...