‘European Reference Networks’ (ERNs) are a European Union’s initiative that will make national health systems cooperate in the interest of patients (more information here).
The European Reference Network on Paediatric Cancer (ERN PaedCan) will reduce inequalities in childhood cancer survival by providing high-quality, accessible and cost-effective cross-border healthcare to children and adolescents with cancer, regardless to where they live.
Key Objectives
To make specialised know-how and life-saving paediatric oncology treatments broadly accessible, the ERN PaedCan will create a roadmap of healthcare centres that are worldwide renowned for their expertise in treating paediatric malignancies. This network will facilitate the lives of both healthcare providers and of patients whose conditions require specialist expertise and tools not widely available due to low case volumes and a lack of resources.
The PaedCan ERN will also implement eHealth technologies and improve interoperability across different institutions (e.g. via a virtual paediatric oncology tumour board network to share expertise and advice).
Finally, the ERN will help young patients and their families make informed choices by providing clear information regarding access, quality, safety and reimbursement for treatments received in another EU country. All this will represent more treatment options and less red tape for young patients and their families.
Governance
Patients and Parents within the ERN PaedCan
Parents and survivors will be represented via Childhood Cancer International Europe (CCI Europe) as well as as European Patient Advocacy Group (ePAG) as an initiative of EURORDIS – Rare Diseases Europe.
Feel free to contact CCI Europe or the national contact point in your country!
CCI Europe
E-Mail: office@ccieurope.eu
Website: https://ccieurope.eu/
Facebook: https://www.facebook.com/EuropeCCI
Twitter: https://twitter.com/cci_europe
Instagram: https://www.instagram.com/cci.europe/
For more information have a look at the PaSOs (Parents and Survivors Organizations) sub-network Roadmap
CCI Europe
CCI Europe represents Europe in the CCI (Childhood Cancer International) global network of childhood cancer parents‘and survivors‘support groups.
The CCI Europe Regional Committee was created in 2012 within the framework of the EU project ENCCA.
CCI Europe works together with the medical and psychosocial professional, academia, researchers, scientists, civil society, private organizations and industry for the same aim, to help children and adolescents with cancer to be cured, with no – or as few as possible – long term health problems / late effects.
Role, structure and responsibilities of CCI Europe within ERN PaedCan
CCI Europe is part of the ERN PaedCan’s Oversight Committee and so part of its decision-making structure by providing the views of parents and survivors. Furthermore, CCI Europe will be involved in the evaluation of the network at regular intervals to ensure transparency and will contribute to the dissemination of patient information, policy, good practice, care pathways and guidelines in close cooperation with SIOPE. Also, information for parents and childhood cancer survivors will be improved in cooperation with Childhood Cancer International (CCI), including information on clinical trials and clinical research.
CCI Europe is recently building a sub-network, which meets the needs of the ERN PaedCan. The structure is shown in the image below. CCI Europe will be the link between the coordinator of the ERN PaedCan and the national contact points – Patients’ and Parents’ groups in Europe. As such, CCI Europe has a mediating role between the project coordinator and the affected families, regarding the transfer and provision of information – in both directions, bottom-up and bottom-down. The needs of affected families must reach the network’s coordinator and the recent developments must reach the involved childhood cancer organizations. So, one main aim of CCI Europe will be to keep the community up to date and disseminate all important information about and innovations or reforms in the ERN. Furthermore, CCI Europe will provide the coordinator with feedback concerning the ERN, which will be given by the national contact points. CCI Europe will continue its advocacy activities also within the ERN and will try to represent the Patients’ and Parents’ voice as effectively as possible. CCI Europe will be a contact point for affected children and their families and will incessantly work on being as supportable as possible.
In each of the Member States must be a central national contact point available for affected families, whom they can address with their queries, requests and possible uncertainties for advice and support. The duty of the involved childhood cancer organizations is, to inform about the ERN PadCan itself and its values but at the same time about patient rights /e.g. the right of a 2nd opinion. Providing safety through transparency, is the idea. Affected families have to know, which is the reference center in their country, where to find the needed expertise and best treatment for their child. If a treatment abroad should be unavoidable, then there hast to be as well a contact point for the families arriving, to support them regarding logistics, administrative issues, to catch them up mentally and provide them with safety. A national contact point must not necessarily be a national umbrella organization but should be in regular contact and should collaborate closely with the other (regional) organizations in the country.
The patients and parents sub-network within ERN PaedCan
The ePAG (European Patient Advocacy Group) of the ERN PaedCan
EURORDIS has developed a European Patient Advocacy Group (ePAG) for each ERN disease grouping. ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.
It is important that patient representatives and clinicians evolve how they work together in the new system of ERNs. EURORDIS will continue to support patient representatives in developing this approach and in ensuring that they shape the development of ePAGs.
ePAGs deliver these aims through their ePAG Patient Advocates:
Luisa Basset
Federación Española de Padres de NIÑOS CON CÁNCER
CCI Europe Committee
(ePAG steering committee member)
Anne Goeres
Fondatioun Kriibskrank Kanner
CCI Europe Committee
Lejla Kamerić
Heart for kids with cancer – Bosnia and Herzegovina
CCI Europe Committee
Anita Kienesberger
Austrian Childhood Cancer Organization
Chair of the CCI Europe Committee
(ePAG steering committee member)
Harun Šabić
Heart for kids with cancer – Bosnia and Herzegovina
CCI Europe Committee
