The Joint Action on Rare Cancers (JARC) is aimed to integrate and maximize efforts of the European Commission and EU Member States to advance quality of care and research on rare cancers. The public health challenge posed by rare cancers combines both the typical problems of rare diseases and cancers where the need of timely diagnosis and access to quality treatment is vital. Accordingly, JARC is shaping its efforts around theEuropean Reference Networks (ERNs):three of which are specifically devoted to rare cancers, have been conceived by the EU Commission as a means to provide “highly specialised healthcare for rare or low-prevalence complex diseases”.
The formal activation of European Reference Networksis a cornerstone in the EU cooperation on rare cancers, and this Joint Action should be, instrumental to help them evolve by optimizing the process of ERN creation through the provision of operational support and professional guidance in the areas of quality of care, epidemiology, research and innovation, education and state of the art definition on prevention, diagnosis and treatment of rare cancers. The JointAction on Rare Cancers and the European Reference Networks are crucial game changers for rare cancer patients in Europe bringing together scarce knowledge and fragmented resources to maximise synergies and results.
"Nothing about us without us!" ECPC
The European Cancer Patient Coalition (ECPC) is honoured to be one of the patient organisations representing the needs, rights and hopes of rare cancer patients in the JARC. ECPC counts on the expertise and collaboration of rare cancer patient organisations all over Europe to continuously represent the rare cancer patient community. Accordingly, following the formal request of several rare cancer patient representatives at the ECPC's AGM 2016, ECPC has established a Working Group on Rare Cancers (WGRC) working in parallel with the JARC, in order to guarantee that a large number of rare cancer patient organisations, representing different European countries and rare cancer types, will be able to contribute to the activities of the JARC: the European Cancer Patient Coalition has a horizontal role representing the voice of the rare cancer patients across all the work packages.ECPC will build on experience gained during its 3 years collaboration in the RARECAREnet project.
WGRC members are ECPC Members (Full and Associate) and non-member organisations with an interest in rare cancers. To this day, the WGRC comprises 30 organisations across Europe.
WGRC Chair:Jana Pelouchova ECPC Board Member and General Secretary
WGRC Vice Chairs: Laura D'Avanzo from Glioblastoma Multiforme - Cancro al Cervello, Italy and Mary Skehan from Slainte an Chlair, Ireland
WGRC representatives provide the patient perspective on the Joint Action on the Rare Cancers and discuss on any topic relevant to rare cancers. Specifically, representatives should:
Contribute to the JARC activities, providing feedback and advice on all relevant tasks;
Ensure that patient concerns are appropriately addressed within the JARC;
Contribute to the development of patient information, rare cancer policies, quality standards for rare cancers, best clinical practices and recommendations;
Contribute to the dissemination of patient information on rare cancers both at national and European levels;
Provide the patient perspective on the unmet needs of people living with rare cancers in their country;
Share with ECPC any other topic related to rare cancers.
As part of its ongoing work to support people with rare cancers, ECPC is working to identify, produce, and disseminate patient information on rare cancers. We are also looking for suggestions from our Members for additional patient guides that they would find useful. Currently, patient guides on rare cancers include:
The 3rd Health Programme is about fostering health in Europe by encouraging cooperation between Member States to improve the health policies that benefit their citizens. The programme aims to support and complement Member States health initiatives and is translated into annual work programmes defining actions in priority areas set in the Programme Regulation EU N° 282/2014.On this basis the Consumer, Health and Food Executive Agency organises every year calls for proposals: Joint Actions are one funding instrument under the 3rd Health Programme 2014-2010.
Joint Action on Rare Cancers (JARC)
JARC is a 3 initiative launched in November 2016 with the goal of contributing to improve health outcomes for patients with rare cancers in the European Union and, thus, decreasing health inequalities across the EU. The Joint Action on Rare Cancers in particular will address the lack of systemic inclusion of rare cancers in national cancer ploans across Europe by formulating policy recommendations which will be later implemented by the Member States in relevant in EU initiatives. The Joint Action will be instrumental to ensure proper roll out to the European Reference Networks (ERNs) by optimizing the process of creation of the ERNs.