RareResourceNet – the European Network of Resource Centres for Rare Diseases – aims at accelerating the development and the implementation of holistic high quality care pathways for people living with a rare disease across Europe, to contribute to raise standards of care and support.
We empower service providers, professionals, patients and carers to overcome the challenges of rare diseases. Moreover, we advocate for the adoption of holistic and integrated care services and policies in European countries. These must address the particular challenges and disabilities generated by rare diseases. In addition, they must recognise the potential and the will of people with a rare disease and their carers to participate in the labour market and in society to their fullest potential, on equal footing with other citizens.
What does “holistic care and services” mean to us?
The World Health Organisation defines the holistic approach to health care, as one in which «the individual who needs care is viewed and respected as a whole person with multidimensional needs» (WHO, 2007).
RareResourceNet envisions that holistic care and services aim at addressing the multidimensional health, psychosocial, educational, and daily life needs, abilities and wishes of people with a rare disease and their carers. By doing so, they empower and support people with a rare disease and their carers to live their lives in the most fulfilling and autonomous manner possible, and to fully enjoy their fundamental human rights.
Holistic care and services must therefore be person-centred, participative, multidisciplinary, integrated and accessible. In order to cover these dimensions, they require a strong multi-sectoral partnership and coordination between competent authorities, service providers, professionals, civil society and beneficiaries.