EU Joint Action on Rare Cancers (JARC)

Joint Action (JA) – Rare Cancer

JARC is funded by the EU’s 3rd Health Programme fostering health in Europe by encouraging cooperation between Member States to improve health policies that benefit their citizens. The programme aims to support and complement Member States’ health initiatives.

01/10/2016 – 30/09/2019 (3 years)

Annalisa Trama, Fondazione IRCCS Istituto Nazionale Dei Tumori (INT)


Associated Partners

Fondazione IRCCS Istituto Nazionale Dei Tumori (INT) Italy

Ethniko Kai Kapodistriako Panepistimo Athinon Greece

Organisation of European Cancer Institutes (OECI)

Institut Scientifique de Santé Publique (WIV-ISP) France

University of Pecs (UP) Hungary

European Society for Paediatric Oncology (SIOPE)

Institut Catala d’Oncologia (ICO) Spain

Cancer Society of Finland (CSF)

Hrvatski Zavod Za Javno Zdravstvo (CNIPH) Croatia

Escuela Andaluza de Salud Pública (EASP) Spain

European Organisation for Rare Diseases Association (EURORDIS)

Fundación para La Formación e Investigación Santitarias de la Región de Murcia (FFIS-CARM) Spain

Institut National du Cancer (INCA) France

Institut National de la Santé et de la Recherche Médicale (INSERM) France

National Cancer Registry Board (NCRB) Ireland

Szeged Tudomanyegyetm (USZ) Hungary

Orszagos Onkologiai Interzet (OOI) Hungary

Universitat de València (UVEG) Spain

Viesoji Istaiga Vilniaus Universiteto Ligonines Santariskiu Klinikos (VULSK) Lithuania

Fundacio Hospital Universitari Vall d’Hebron – Institut de Recerca (VHIR) Spain

Ministry of Health Czech Republic

Aristotelio Panepistimio Thessalonikis (AUTH) Greece

Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana Spain

Gemeinnutzige GMBH (GPOH) Germany

Ministry of Health Italy

Babes-Bolyai University Romania

Ministry of Health Cyprus

Health Service Executive (HSE) Ireland

Lietuvos Sveikatos Mokslu Universiteto Ligonine Kauno Klinikos Lithuania

Ministry of Health Poland

PanCare Netherlands

Ministry of Health Malta

Deutsche Krebsgesellschaft EV (DKG) Germany

Oslo Universitetssykehus HF (OUS) Norway

Collaborating Partners

Paediatric Oncology Unit ‘Marianna V. Vardinoyannis – ELPIDA’ of ‘Aghia Sophia’ Children’s Hospital

The European Cooperative Study Group for Pediatric Rare Tumors (EXPeRT)

European Cancer Patient Coalition (ECPC)

University College of London – Institute of Child Health (UCL-ICH)

European School of Oncology (ESO)

European Medicines Agency (EMA)

European Network of Cancer Registries (ENCR)

Joint Research Centre (JRC)

Belgian Cancer Registry (BCR)

Italian National Institute of Health

European Society for Medical Oncology (ESMO)

European Organisation for Research and Treatment of Cancer (EORTC)

AntiCancer Fund

Association of European Cancer Leagues (ECL)

European Society of Surgical Oncology (ESSO)

Childhood Cancer International (CCI)

St Anna Children’s Cancer Research Institute (CCRI)

Rare Cancer Europe (RCE)

European Federation of Pharmaceutical Industries and Associations (EFPIA)

University of Milan Italy

Hospital Universitario y Politécnico de La Fe GIST – Cancer IIS La Fe (CICT) Spain

Rigas Stradina Universitata Latvia

European Hematology Association Netherlands

Directorate General of Health Portugal

Ospedale Pediatrico Bambino GESU Italy

Universitata degli Studi di Padova Italy

Institut Curie France


Why it matters

There are more than 4 million people affected by rare cancers in the EU, representing about 24% of all cancer cases diagnosed in the 28 Member States each year. These are identified as those with an incidence of less than 6 per 100 000 persons per year. The EU Joint Action on Rare Cancers (JARC) is working to produce recommendations aimed at optimising the development of European Reference Networks (ERNs) by providing operational solutions and professional guidance in the areas of quality of care, epidemiology, research and innovation, education and state-of-the-art definitions for prevention, diagnosis and treatment of rare cancers.

What ECPC does

ECPC has established a Working Group on Rare Cancers (WGRC), which is working in parallel with the JARC to guarantee that rare cancer patient organisations, representing different European countries and rare cancer types, will be able to contribute to the activities of the JARC, ranging from consolidating the definition of rare cancers, a list of rare cancers, medical education and patient education, to harmonising clinical practices in rare cancers.

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This project is funded by the European Union

National healthcare authorities should look to the ten EU JARC recommendations in order to better serve rare cancer patients while the EU should support their implementation through the European Reference Networks

Francesco de Lorenzo, ECPC Past President