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
Our objectives
- Facilitate the networking and mutual learning of services aiming at providing holistic care for people with a rare disease and their carers in Europe;
- Serve as resource hub, to support the implementation of holistic high quality care pathways:
- Gather and disseminate knowledge and expertise on rare diseases and their impact;
- Support the elaboration and dissemination of guidelines and good practices;
- Develop and deliver training resources for service providers and for patients and carers;
- Contribute to the elaboration of quality criteria for the accreditation of services to provide holistic care;
- Support the elaboration of indicators to measure the impact of holistic care;
- Gather patient reported outcomes to support evidence-based decision making;
- Promote innovation in social services in all aspects and areas;
- Advocate for the importance of holistic high quality, integrated care and for creation of new resource centres for rare diseases across Europe;
- Promote the cooperation between all rare disease stakeholders involved in care provision;
- Raise awareness of rare diseases aligned with EURORDIS-Rare Diseases Europe and National Alliances of patient organisations for rare diseases;
- Strive to break the isolation and empower people with a rare disease and carers.