ABSTRACT
About 500,000 patients with rare adult solid cancers (RASC) are diagnosed yearly in Europe. Delays and unequal quality of management impact negatively their survival. Since 2017, European reference networks (ERN) aim to improve the quality of care of patients with rare disease. The steering committee of EURACAN, including physicians, researchers and patients review here the previous actions, present objectives of the ERN EURACAN dedicated to RASC. EURACAN promoted management in reference centres, and equal implementation of excellence and innovation in Europe and developed 22 clinical practice guidelines (CPGs). Additionally, fourteen information brochures translated in 24 EU languages were developed in collaboration with patient advocacy groups (ePAGs) and seventeen training session were organized. Nevertheless, connections to national networks in the 26 participating countries (106 centres), simplification of cross-border healthcare, international multidisciplinary tumour boards, registries and monitoring of the quality of care are still required. In this Health Policy, evaluation criteria of the performances of the network and of health care providers are proposed.
ABSTRACT
Addressing the many challenges posed by rare diseases to patients, families, and society at large demands a specific national (as well as transnational) focus. Historically, the practice of elaborating and adopting national plans and strategies for rare diseases, following a request from the European Commission in 2009, has been an essential means of ensuring this focus, with 25 European Member States having adopted a plan or strategy at some stage. However, from the vantage point of late 2020, there are signs that momentum and commitment to the development, implementation, and renewal of national plans is waning, in some cases. In this article, we examine the status quo and explore the trend for national plans and strategies to expire without clear commitments or timelines for replacement. We also examine the factors and institutions which supported the initial drive towards the adoption of national plans and strategies in Europe and consider the very different climate in which the next generation of national policies may-or may not-be shaped.
ABSTRACT
The notion of empowerment is linked to patients' everyday life and is the base allowing for the patient engagement through which individuals and communities are able to express their needs, are involved in decision-making, take action to meet those needs. In the field of rare diseases, empowerment strategies have greater value due to low prevalence, lack of expertise, poor quality of life. Avenues to patient empowerment are: health literacy and capacity-building; shared decision-making; support to self-management. Patient empowerment is recognised as key enabler in creating sustainability as addressing challenges faced by modern healthcare systems in terms of effectiveness, access and resilience. It is recommended to develop a comprehensive EU roadmap on patient empowerment including specific recommendations, taking stock of good practices. This holistic approach should lead to a society where all actors are fulfilled human beings and unmet needs are addressed in compliance with fundamental human rights.
