EU Joint Actions on Rare Diseases and on Rare Cancers

What is an EU Joint Action?

A “Joint Action” is a group of coherent activities on a specific topic, which is jointly funded by the European Commission and those EU Member States who decide to participate in it. As a result, a Joint Action has a strong European added value and provides outcomes that offer benefits on the national level.

EU Joint Actions on Rare Diseases and on Rare Cancers

1. RD-ACTION (EU Joint Action on Rare Diseases) 

 

The current Joint Action on rare diseases, RD-ACTION, started on 1 June 2015 for a three year duration. It is the continuity of both the EUCERD Joint Action (March 2012 – November 2015) and the former Orphanet Joint Action.

Coordinator and partners

RD-ACTION is coordinated by INSERM/Orphanet (Dr Ana Rath), Paris, France. It gathers 64 partners from 40 countries, including most EU Member States.
The partners involved represent ministries of health, public health institutions, Orphanet teams across Europe and beyond, researchers and patient organisations.

Objectives

The primary objective of RD-ACTION (as the EUCERD Joint Action) is to support the implementation of the European Commission Communication on rare diseases and Council recommendation for the development of European and national policies in the field of rare diseases. Partners contribute to several recommendations to be submitted to the Expert Group on Rare Diseases and are responsible for achieving specific tasks.

More specifically, RD-ACTION:

  • supports the development and sustainability of the Orphanet database, the biggest global repository of information on rare diseases;
  • contributes to solutions to ensure the appropriate codification of rare diseases in health information systems across Europe;
  • works toward the development of new policy guidance and recommendations for increasing the visibility of rare diseases in health systems and developing European Reference Networks for rare conditions;
  • facilitates the transfer of EU rare disease policies and recommendations into national health systems of EU member states on issues ranging from access to treatment, organisation of healthcare pathways to the integration of rare diseases into social policies.

EURORDIS’ involvement

European projects can be divided into “work packages” (WP). A work package can be thought of as a sub-project, which, when combined with other work packages, form the completed project. RD-ACTION is composed of 6 work packages.

Read the RD-ACTION leaflet for more detail on the six work packages. 

EURORDIS:

  • leads Work Package two on communication;
  • organised the 8th European Conference on Rare Diseases and Orphan Products in 2016;
  • provides the rare disease patients’ perspective in the Work Package “Rare Disease Policy” and contributes to shaping European Reference Networks;
  • facilitates the organisation of EUROPLAN national workshops by National Alliances for rare diseases in Europe. These workshops are addressing specific national priorities to be implemented within integrated national plans for rare diseases.

2. JARC (EU Joint Action on Rare Cancers) 

The JARC, started on 1 October 2016 for a three year duration. This is the first Joint Action tackling the issue of Rare Cancers. It is expanding on the work initiated in previous European projects, RARECARE and RARECARENet, which provided an operational definition of rare cancers, a list of rare cancers meeting this definition, strategies and networking mechanisms for disseminating quality information among all key players involved in Europe-wide surveillance on and treatment of rare cancers.

Coordinator and partners

JARC is coordinated by the Fondazione IRCCS Istituto Nazionale dei Tumori (Prof. Paolo Casali), Milan, Italy. It gathers 57 partners from 22 EU Member States and Norway and Switzerland.

The partners involved represent ministries of health, public health institutions, cancer control programmes, universities, population-based cancer registries, cancer institutes, other not-for-profit organisations and patient organisations.

The three partner patient organisations are the European Cancer Patient Coalition (ECPC), Childhood Cancer International (CCI) and EURORDIS. They are involved across all work packages of the JARC.

Objectives

All the partners of the JARC are engaged in working together to:

  • prioritise rare cancers in the agenda of the EU and Member States, with a view to national cancer plans and quality of healthcare, harmonisation of clinical practice, innovation through promotion of clinical and translational research;
  • develop innovative and shared solutions, mainly to be implemented through the European Reference Networks on rare cancers, in the areas of quality of care, research, education and state of the art definition on prevention, diagnosis and treatment of rare cancers.

EURORDIS’ involvement:

EURORDIS teams up with ECPC and CCI-Europe to represent the patients’ perspective in the work and future recommendations of the JARC.

EURORDIS’ specific mission is to: 

  • bring its expertise on the development of European Reference Networks involving elected representatives of European Patient Advocacy Groups (ePAGs) for each concerned ERN, namely EURACAN, PaedCan-ERN, EuroBloodNet, GENTURIS;
  • make a link with ongoing work within the RD-ACTION, the Joint Action on Rare Diseases;
  • identify synergies and areas of stronger collaboration between rare disease national plans and cancer national plans in EU Member States.

Please read the JARC leaflet and visit the website for further information: www.jointactionrarecancers.eu

European Reference Networks (ERNs) on Rare Cancers

On 15 December 2016, the Board of EU member states on ERNs approved applications to forming ERNs. In the field of rare cancers, the following three ERNs have been approved:

  • EURACAN – solid tumours in adults
  • PaedCan-ERN – paediatric cancers
  • EuroBloodNet – rare haematologic disorders including haematological malignancies in adults

Some other ERNs, such as GENTURIS (Genetic Tumour Risk Syndromes) cover some rare cancers or conditions which could give rise to cancers.

Public summaries of ERNs are available here.

 

Page created: 20/08/2013
Page last updated: 09/06/2017
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases