Resource centres for rare diseases

A one-stop shop style service designed for people living with rare diseases and their carers.

Resource centres for rare diseases are a one-stop shop service, complementary to health and social care services, specifically designed for people living with a rare disease and their carers. Resource centres provide holistic services and support, while also creating a bridge between patients and families and various stakeholders, services and professionals providing health care, social care, and social support – including rehabilitation, education and employment.

Examples of resource centres for rare diseases:

Ågrenska, Sweden; Casa dos Marcos, Portugal; Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras, Spain; Debra Centre, Croatia; Eesti Agrenska, Estonia; Frambu, Norway; NoRo, Romania; list of resource centres in Europe.

RareResourceNet – European Network of Resource Centres for Rare Diseases

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

RareR

esourceNet – 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.

RareResourceNet is being created within the INNOVCare project. The gathering of services in this network is possible following the mapping of specialised social services for rare diseases performed within the European Joint Action for Rare Diseases (EURCERD Joint-Action, 2012-2015).

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.

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.

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

Steering Group:
- Anders Olauson, Ågrenska, Sweden (Chair);
- Dorica Dan, NoRo, Romania (Secretary);
- Lisen Julie Mohr, Frambu, Norway (Communication Officer).

Working Group:
- Casa dos Marcos, Portugal;
- Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras, Spain;
- Debra Centre, Croatia;
- Eesti Agrenska Fond, Estonia.
Secretariat: EURORDIS-Rare Diseases Europe.

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: