EU Joint Action on Rare Cancers (JARC)


Joint Actions are the funding instrument defined under the EU Health Programme to implement the priority actions in the field of health to be supported at the EU-level. Joint Actions are coordinated jointly by Member States or their appointed bodies and the European Commission.

The Joint Action on Rare Cancers (JARC) was a 3-year initiative launched in October 2016 that aimed to formulate policy recommendations on rare cancers that can be implemented by Member States and in relevant EU initiatives.

The objective of the JARC was to address the lack of systematic inclusion of rare cancers – including paediatric malignancies – in national cancer plans across Europe and help ensure the appropriate roll out and implementation of the European Reference Networks (ERNs).

The Joint Action included 34 partners including Ministries of Health, universities, public health institutions, cancer registries, oncological institutes, patients’ associations and professional societies. It was coordinated by the Fondazione IRCCS Istituto Nazionale dei Tumori of Milan.

The Role of SIOPE

SIOPE has been nominated as the Leader of Work Package 9 on Childhood Cancers.

Moreover, SIOPE contributed to other JARC Work Packages: WP4 ‘Epidemiology’, WP5 ‘Assuring Quality of Care’, WP8 ‘Education’ and WP10 ‘Policy’.

SIOPE worked closely with the European Committee of Childhood Cancer International (CCI Europe) – the organisation representing cancer parents, patients and survivors in a continuation of a long-term and instrumental partnership.

The JARC was an important opportunity to advance some of the key objectives of the SIOPE Strategic Plan, developed in cooperation with parents, patients and survivors, and to build on achievements of previous EU projects where SIOPE played a key role: ENCCA, ExPO-r-Net, PanCareSurFup and the European Partnership for Action Against Cancer (EPAAC). It was also set to further strengthen the existing cooperation between paediatric and adult oncology.

JARC Work Package on Childhood Cancers

The objectives of the WP coordinated by SIOPE with the participation of 19 partners were:

  1. Defining collaborative measures for ensuring access to standard treatments and accelerating access to innovative therapies;
  2. Recommending solutions for delivering optimal care and research for young people with extremely rare cancers;
  3. Consolidating guidelines and recommendations on models of healthcare for survivors of childhood cancers.

SIOPE and the Work Package partners were working towards these objectives through 4 tasks:

  1. Formulating recommendations to solve bottlenecks and barriers in accessibility of standard treatments across Europe (essential medicines and radiotherapy); Lead: SIOPE
  2. Formulating recommendations to increase and facilitate timely access to innovative therapies for children and adolescents with newly diagnosed high-risk and relapsed malignancies; Lead: SIOPE, Sub-task Lead: VHIR - Fundacio Hospital Universitari Vall d'Hebron - Institut de Ricerca
  3. Formulating solutions to deliver optimal care and research for young people with extremely rare cancers; Lead: GPOH - German Society of Paediatric Oncology - University of Erlangen
  4. Formulating proposals about models of healthcare for survivors of childhood cancers, including long-term follow-up, transition to adult medicine, and the use of the ‘Survivorship Passport’. Lead: PANCARE

CCI Europe was participating in all tasks of the Work Package.


JARC outcomes:


JARC Acknowledgement

This content arises from the project “EU Joint Action on Rare Cancers (JARC)’ which has received funding from the European Union, in the framework of the Health Programme.