27 May 2026
The high-level webinar “From Care to Cure: an EU-wide Network Advancing Rare Kidney Disease Healthcare and Research”, organized by EKHA and ERKNet, will bring together key stakeholders to build a shared understanding of the current EU rare disease policy landscape and identify practical opportunities for coordinated advocacy at both European and national levels. During this 90-minute session, EKHA’s recent policy work on kidney health will provide the starting point for discussions focused on translating policy developments into meaningful impact for patients and families.
Participation in the webinar is free of charge, and you can join the webinar on this link.
The webinar will address major challenges faced by people living with rare kidney diseases, including delayed diagnosis, fragmented care pathways, unequal treatment access, and inconsistencies in healthcare delivery across Europe. Discussions will cover patient perspectives and inequalities in care, prevention and early diagnosis, outcomes from JARDIN activities supporting national advocacy efforts. Further topics include education and professional capacity building, research and clinical trial readiness, data sharing and registries, and persistent disparities in access to orphan medicines and therapies. The session will conclude with a discussion on strengthening advocacy efforts and ensuring rare kidney diseases remain a priority within the broader European health agenda.
Webinar agenda
Rapid update: EKHA’s latest kidney health policy work
Rare kidney diseases advocacy strategies going forward
Djalila Mekahli, MD, PhD, FESPN, FERA
Dr. Mekahli is co-chair of the Working Group on Autosomal Dominant Structural Kidney Disorders (including ADPKD and TSC) within the European Reference Network for Rare Kidney Diseases (ERKNet). She is a pediatric nephrologist at University Hospitals Leuven (UZ Leuven) and a professor at the Faculty of Medicine, KU Leuven, Belgium. Her research focuses on rare kidney diseases, particularly ciliopathies, including ADPKD/ARPKD/TSC in children and young adults.
Patient and caregiver perspective
Flavia Galletti
Flavia Galletti is an international patient advocate specialising in rare genetic kidney diseases, with a particular focus on ADPKD, ARPKD. She is President of PKD International, Board Member of AIRP – Associazione Italiana Rene Policistico and FEDERG, and an ePAG representative within ERKNet.
Susana Carvajal Arajona
Susana Carvajal Arajona serves as President of FEDERG and works at the Spanish Federation of Rare Diseases (FEDER). As co-founder of the Hipofam in Spain, Patient Association and mother of a child affected by a rare kidney disease, who recently underwent a kidney transplant. Within ERKNet, she coordinates patient representatives across different rare and genetic kidney diseases, collaborating closely with European stakeholders and patient organizations to advance patient-centered care and decision-making.
Prevention & early diagnostics
Francesco Emma
Assistant President of the European Society for Paediatric Nephrology (ESPN). Dr. Emma’s primary research interests are in rare renal diseases, in particular in cystinosis and nephrotic syndrome. He has authored >250 research articles and several textbook chapters, and is a senior editor of the IPNA textbook “Pediatric Nephrology”. He has served in several editorial boards and scientific society committees in the fields of Nephrology and Pediatric Nephrology.
Outcomes of the JARDIN activities
Jan Halbritter
Jan Halbritter is a Professor of Medicine and Nephrology and the chief of Nephrology at University Hospital Freiburg, Germany. He is an expert in genetic kidney disease with a focus on cystic diseases of the kidneys and the liver. Jan Halbritter used to hold a Professorship for genetic kidney diseases at Charité Berlin, where he lead the Center for Rare Kidney Diseases (CeRKiD) from 2021 to 2026. He was trained at the University of Leipzig (Germany), the University of Michigan (US), and Harvard Medical School (US) during a Postdoctoral Research Fellowship.
European education and capacity building for healthcare professionals
Stefanie Häberle
Dr. Stefanie Häberle has been Project Manager of the European Reference Network for Rare Kidney Diseases (ERKNet) at Heidelberg University Hospital since 2020. She oversees the administrative and operational management of ERKNet, with a particular focus on educational activities for patients and healthcare professionals. She also co-manages the ERKNet Registry (ERKReg), where she is responsible for administration, user support, data validation, and collaboration with stakeholders. Her work includes coordinating data access procedures, improving registry data quality, and advancing the registry toward regulatory-grade standards in collaboration with ERDERA and the European Medicines Agency (EMA).
Clinical trial landscape for rare kidney diseases
Marina Vivarelli
Head of the Laboratory of Nephrology and the Clinical Trial Center at Bambino Gesù Children’s Hospital, ESPN Fellow and member of the ERA Scientific Advisory Board.
Rare disease registries – the power of real-world data: insights from ERKReg
Stefanie Häberle
Project Manager of the European Reference Network for Rare Kidney Diseases (ERKNet)
Access and equity in rare disease treatments
Roser Torra
Prof. Roser Torra serves as the Chief of Clinical Nephrology and coordinates the Inherited Kidney Diseases (IKD) Clinic at the Nephrology Department of the Fundació Puigvert, Barcelona, Spain. She holds the position of Professor of Medicine at the Universitat Autonoma de Barcelona.
Prof. Torra holds the position of President of the ERA (European Renal Association) from 2024 to 2027.
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