JARC
Joint Action on Rare Cancers
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)
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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.
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