patients’ INVOLVEMENT
Brief Description of Role of Patients & Families
Childhood Cancer International – Europe (CCI Europe) represents parents and survivors within ERN PaedCan, ensuring patient perspectives shape the network’s development and decisions. As part of the European Patient Advocacy Group (ePAG), it contributes to patient information, policy, and care guidelines in collaboration with the European Society for Paediatric Oncology (SIOPE). CCI Europe also acts as a liaison between ERN PaedCan and national patient organizations, supporting communication between families and healthcare providers. Together with the healthcare professionals of ERN-PaedCan, we aim to improve access to high-quality paediatric oncology care and reduce treatment disparities across Europe.
The ERN-PaedCan ePAG Team
Luisa Basset-Salom, Spain, Vice Chair of CCI Europe Committee
Barbara Brunmair, Austria, CCI Europe Office Pillar & Projects Coordinator
Anne Goeres, Luxembourg, CCI Europe Committee Member
Anita Kienesberger, Austria, Chair of CCI Europe Committee
Harun Šabić, Bosnia-Herzegovina, CCI Europe Committee Member
Lidiya Vitanova, Bulgaria, CCI Europe Diagnosis Treatment & Care Pillar Member
Most ePAGs are also active in national patient organizations (see CCI Europe website). If you have any questions about the role of ePAGs in ERN-PaedCan and if you are interested in becoming an ePAG yourself, please contact: b.brunmair@ccieurope.eu. Additional info on ERN-PaedCan´s governance structures, including the Oversight Committee can be found here.
What are ESCPs and how can we use them?
> A Guide for Patient Advocates
ERN PaedCan has developed European Standards of Care Pathways (ESCPs) to support the diagnosis and treatment of pediatric cancers. These ESCPs are detailed guides for doctors and healthcare teams that explain how to diagnose and treat different types of childhood cancers in a consistent way across Europe.
Even though these guides are written for medical professionals, patient advocates can still use them in meaningful ways. By learning what cancer types are covered and understanding the basic care steps, advocates can spread awareness—both to families and to local doctors who might not know these resources exist.
This is especially important in countries where children may not have access to clinical trials or specialist cancer centers. Advocates can encourage healthcare providers to use the ESCPs to follow the best European standards. They can also let families know that cross-border care options exist, like getting a second opinion or traveling for treatment through special EU programs.
In short, even though ESCPs are medical documents, they can be powerful tools for patient advocates to push for better care, inform families, and make sure every child has a fair chance at the best treatment.
More information:
To help us understand the availability of recommended treatments and diagnostics throughout Europe, we encourage you to complete this survey after you have consulted an ESCP
What is the CPMS and how can we use it?
> A Guide for Patient Advocates
The Clinical Patient Management System (CPMS) of ERN PaedCan is a secure online platform that allows healthcare professionals across Europe to consult with leading experts on childhood cancer types. Through the CPMS, complex cases can be discussed by a panel of specialists to ensure children and young people receive the best possible care.
Patient advocates and families can play an important role in this process. A patient pathway has now been developed to guide families who wish for their case to be reviewed through the CPMS. While only healthcare professionals can upload and receive case recommendations through the system, families are encouraged to speak with their treating clinician about the possibility of using CPMS. Families and clinicians can work together to access this valuable resource.
Importantly, any clinician – not just those within the ERN PaedCan network – can upload a case to the CPMS. This makes it easier for more patients to benefit from expert advice.
ERN PaedCan is also actively working to expand access to the CPMS beyond the European Union. Ukraine is the first non-EU country that benefits from this effort, with hopes of including more countries soon.Patient advocates can help raise awareness about the CPMS and support families in navigating the pathway to expert care.
More information:
More important information
Further important information and news related to ERN-PaedCan
Associations
CCI Europe member organizations
