The partnership includes all the existing EU national Clinical trial groups dedicated to the treatment and research in favour of children and adolescents with VRT and therefore all the existing paediatric VRT registries. 

All these Groups have the endorsement of their paediatric oncology national societies and have elaborated a development plan before this application: “ERN Paed Can ROADMAP for Cross–Border Health Care Needs. Guidance to qualified Advice on Diagnostics and Treatments for Children and Young People with Cancer. The Very Rare Tumours Sub-network”.


P5 Institut Curie (CURIE) is one of the largest paediatric oncology departments in Europe taking care of 320 new patients with solid tumors less than 25 years each year. The DOPAJA applies guidelines and participates in multicentre trials, built in the framework of the European continental branch of SIOP (, the French Society of Pediatric cancer (SFCE) ( and the European “Innovative Therapies for Children with Cancer” (ITCC) consortium ( Paediatric oncologists working at Institut Curie are strongly involved in several SIOP- Europe groups (neuroblastoma, brain tumours, Ewing, soft tissue sarcoma, nephroblastoma, retinoblastoma, very rare cancers, Hodgkin and non-Hodgkin lymphoma) and are PI in France or Europe of several national or European studies (medulloblastoma, neuroblastoma, soft tissue sarcoma, retinoblastoma). There is excellent multidisciplinary care with well developed, integrated psycho-social, educational and family support. Diagnosis facilities are developed according to the highest current standards: 

  • Referring paediatric pathologist 
  • The Institut Curie’ molecular platform is one of the of 28 regional molecular genetics centres labelled by French National cancer Institute (INCa), allowing molecular diagnostics and tumour molecular profiles for therapeutic decision into routine clinical practice. These platforms play an active role in current European studies on neuroblastoma, medulloblastoma, soft tissue and Ewing sarcomas (www. 

P6 Medical University of Gdansk (GUMed) is the largest medical university in northern Poland, educating nearly 6000 students. It has world class teaching and research staff and state-of-the-art equipment and research facilities. Their key functions, besides teaching, are focused on basic and applied research in different fields of life and medical sciences and their implementation into the clinical practice. GUMed’s scientists have published over 5633 papers in international journals amounting to an overall impact factor of 2.549,907 They have also applied for over 25 patents and have secured both, the Polish government and European funding for over 20 million euros.  

The clinical issues connected with patients’ diagnostics, therapy and prophylaxis are performed through the University Clinical Center (UCC), which is supervised by the Rector of GUMed ( 



Member n° Stakeholder Country Representative name
1 Istituto Nazionale per la Cura dei Tumori Italy – Milan Andrea Ferrari
2 Royal Manchester Children’s Hospital United Kingdom – Manchester Bernadette Brennan
3 Hospital Universitario Cruces Spain – Baracaldo Ricardo Lopez
4 University Medical Centre Slovenia – Ljubljana Maja Cesen/Marko Kavčič
5 Clinical Hospital Centre Croatia – Rijeka Jelena Roganovic
6 University Children Hospital Slovakia – Bratislava Alexandra Kolenova
7 University Hospital Santariskiu Klinikos Lithuania – Vilnius Jelena Rascon
8 University Children’s Hospital Skopje FYR Macedonia – Skopje Kata Martinova
9 Hospital Luis Calvo Mackenna Chile – Santiago Milena Villarroel
10 Sahlgrenska University Hospital Sweden – Goteborg Gustaf Osterlundh
11 Hellenic Society Pediatric Haematology Oncology Greece – Athens Apostolos Pourtsidis
12 Childhood Cancer International Europe (CCI) Austria – Wien Anita Kienesberger
13 CHU de Saint Denis France – La Réunion Yves Reguerre
14 Kaplan Medical Center in Rehovot Israel – Rohovot Tal Ben Ami
15 Marciniak Hospital Poland – Wroclaw Jan Godzinski
16 Institute of Oncology Rumania – Bucharest Monica Désirée Dragomir
17 Institutul Oncologic “Ion Chiricuta” Romani – Cluj Napoca Rodica Cosnarovic
18 University Children’s Hospital TIRŠOVA Serbia – Belgrade Dragana Janic
19 CWS of the Society for Paediatric Oncology/Haematology Germany – Stuttgart Monika Sparber-Sauer
Germany – Stuttgart Ewa Koscielniak
20 Hospital Center of São João (CHSJ) Portugal – Porto Nuno Jorge dos Reis Farinha
21 Dmitry Rogachev Federal Research Center of Pediatric Hematology, Oncology and Immunology Russia – Moscow Denis Kachanov
22 Princess Maxima National Center for Pediatric Oncology The Netherlands – Utrecht József Zsiros
23 Research Institute of Pediatric Oncology and Hematology of N.N. Blokhin National Medical Research Centre of Oncology, Ministry of Health of Russia Russia – Moscow Amina Suleymanova