ERN PaedCan: Advancing Paediatric Cancer Care Across Europe
The European Reference Network for Paediatric Cancer (ERN PaedCan) continues to support more equitable, harmonised and high-quality paediatric cancer care across Europe through the development of clinical standards, knowledge exchange and collaboration between specialist centres.
Advancing standards for paediatric cancer care
Six new European Standard Clinical Practice (ESCP) guideline documents have been launched in June 2026. Developed through collaboration between experts from the ERN PaedCan and SIOPE community, the guidelines support healthcare professionals, institutions and national stakeholders by providing practical standards and recommendations for childhood cancer entities.
The newly launched guidelines cover:
- Adrenal and extra-adrenal paraganglioma in children and adolescents
- Carcinomas and carcinoid tumours of the bronchi and lungs
- Choroid plexus tumours
- Neuroendocrine tumours of the appendix
- Non-appendiceal gastroenteropancreatic neuroendocrine neoplasms
- Palliative care.
With the launch of these six documents, a total of 35 ESCP guidelines are now freely available on the ERN PaedCan website.
Driving coordinated action for rare diseases
The Health Leadership Mission for Rare Diseases (HLM4Rare) is a European multi-stakeholder initiative bringing together policymakers, healthcare professionals, patient organisations, researchers, industry and the European Reference Networks to strengthen the European innovation and care ecosystem for rare diseases.
Building on the HLM Declaration, the initiative aims to translate strategic priorities into coordinated action by promoting collaboration, supporting research and innovation, improving access to specialised care, and strengthening the long-term sustainability of the European Reference Networks. Healthcare professionals, researchers, patient advocates, policymakers and other interested individuals are invited to endorse the HLM4Rare Declaration and support its vision for strengthening rare disease care across Europe.
In recent months, the initiative has continued to gain visibility through high-level European policy discussions, including Health without Postcodes, held at the European Parliament on 1 July 2026, and the Europa Connect Health EU Summit – The Future of European Health Policies, held on 14 July 2026. These discussions highlighted the importance of strengthening Europe's long-term investment in health, research and innovation, while ensuring equitable access to specialised care for people living with rare and complex diseases.
As part of these discussions, ERN PaedCan and SIOPE continue to advocate for:
- Faster access to innovation for patients with unmet medical needs through further refinement of the Cross-Border Healthcare Directive and S2 reimbursement framework.
- The development of a pan-European clinical trial framework (28th regime), enabling multinational clinical trials to be organised through a single European approach rather than separate national processes.
- Embedding first-in-child innovation within the European Biotech Act, ensuring that children and adolescents with cancer are considered early in the development and evaluation of innovative therapies
Clinical Patient Management System (CPMS 2.0): Bringing Expertise to Every Patient
The Clinical Patient Management System (CPMS 2.0) is the European Commission's secure, web-based platform that enables healthcare professionals across the European Reference Networks (ERNs) to discuss complex patient cases through virtual multidisciplinary tumour boards. The platform is provided free of charge and is fully compliant with the General Data Protection Regulation (GDPR).
By facilitating secure cross-border collaboration between specialists, CPMS 2.0 allows expertise from across Europe to be brought together to support the diagnosis and treatment of rare or complex paediatric cancer cases. Healthcare professionals can benefit from multidisciplinary expert advice through the secure exchange of clinical information, medical images and documents.
Within ERN PaedCan, dedicated expert groups are available for several paediatric cancer entities and hold regular virtual tumour boards to discuss consultation requests. Healthcare professionals from are encouraged to make use of CPMS 2.0 and contribute to strengthening cross-border collaboration and knowledge exchange across the network.
For mor information about CPMS 2.0 and how to submit a case, please visit the ERN PaedCan website.
Most Challenging Cases in Paediatric Oncology: Call for cases
Continuing its commitment to education and international exchange, ERN PaedCan is also preparing the 2027 Interactive Webinar Series: Most Challenging Cases in Paediatric Oncology, organised in collaboration with Young SIOPE.
Since its successful launch in 2021, the series hasbecome a cornerstone of engaging education and international exchange. The 2027 programme will feature seven challenging and educational clinical cases, presented by young oncologists and followed by live discussions with experts in the field.
Young oncologists are invited to submit their cases for consideration in the 2027 programme. Selected cases will be presented during one of the seven webinars planned for next year.
For more information about the application process, visit here.
European Reference Networks: a flagship EU initiative
A review published in the Orphanet Journal of Rare Diseases highlights the evolution and impact of ERNs, since their establishment in 2017, recognising them as a flagship European initiative connecting more than 1,600 expert centres across 375 hospitals in EU Member States and Norway.
Among the achievements highlighted are more than 4,900 complex cross-border cases discussed through CPMS, over 530 clinical guidelines and recommendations developed, and more than 1,030 educational webinars delivered between 2020 and 2024.
The publication demonstrates the central principle behind the ERN model: enabling expertise to travel across borders rather than requiring patients themselves to travel to access specialised knowledge.