RareResourceNet – European Network of Resource Centres for Rare Diseases

Advancing holistic high quality care and services for people living with rare diseases across Europe.

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.

Our vision

Holistic high quality care and services available to people living with rare diseases across Europe by 2030.

RareResourceNet subscribes the European Commission Expert Group Recommendations to Support the Integration of Rare Diseases into Social Services and Policies (2016), which stress that:

• Failure to meet the serious social needs of people with a rare disease and their families affects their dignity, autonomy and other fundamental human rights expressed in the Universal Declaration of Human Rights and in the United Nations Convention on the Rights of Persons with Disabilities;
• European Member States should promote measures that facilitate multidisciplinary, holistic, continuous, person-centred and participative care provision to people living with rare diseases, supporting them in the full realisation of their fundamental human rights.

RareResourceNet also subscribes to the 2030 Agenda for Sustainable Development adopted by the United Nations in 2015. We believe there is a clear alignment between the Sustainable Development Goals and our mission to improve the lives of millions of people living with a rare disease in Europe.

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.

Governance

Membership

List of Members: 

• Ågrenska, Sweden
• Casa dos Marcos, Portugal;
• Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras, Spain;
• Debra Centre, Croatia;
• Eesti Agrenska Fond, Estonia;
• Frambu, Norway;
• NoRo, Romania.

Which services can join the network:

Resource centres and specialised social services aiming at providing holistic care for people with a rare disease or for other chronic complex conditions and disabilities.

Membership categories:

• Full members;
• Associate members;
• Supporting members;
• Observing members.

To receive more information on RareResourceNet and the membership criteria please contact Lisen Julie Mohr, responsible for the RareResourceNet Secretariat, at ljm@frambu.no.