miércoles, 1 de abril de 2015

Specialised Social Services for Rare Diseases

Specialised Social Services for Rare Diseases

Leer sobre cómo vivir con una enfermedad rara y los servicios disponibles
Centros de recursos – un enfoque de ventanilla única para las personas con una enfermedad rara

Specialised Social Services

Specialised Social Services are instrumental to the empowerment of people living with rare diseases and are essential to the improvement of their well-being and health. This section provides the list of services in Europe, as well as facts, case studies and guidelines for these services. Testimonies of both patients and volunteers can also be found below.

List of services

Learn more about the Resource Centres indicated on the map: their activities, who can attend, how to contact services, and where they are located.

Fact Sheet and Case Studies

Consult our Fact Sheet and Case Studies to learn more about Resource Centres and well established RC across Europe.


People living with a rare disease discuss the benefits they have experienced from using Resource Centre services.

What are the Resource Centres?

Actions performed by Resource Centres are generally specifically targeted to people living with rare diseases, often in partnership or cooperation with Centres of Reference/Expertise or themselves being a Centre of Reference/ Expertise.
Resource Centre services include training courses, information and guidance services, and provision of information concerning social services, documentation and research. Daily support therapies, medical and psychological consultations are often also provided by these centres.
These services could fit into the description of the «one-stop shop style of service for rare disorders» referred to by the participants in the RehabCare Study “An investigation into the social support needs of families who experience rare disorders on the island of Ireland”, being able to provide «flexibility and person-centred approaches which fit the service around the individual’s specific needs» (McGarvey and Hart, 2009).

Why are they needed?

These centres commonly create a bridge between people living with rare diseases/families and all the stakeholders involved in patient care, such as medical services, rehabilitation and therapeutic services, social services and social support authorities, education professionals and other professionals directly working with people living with rare diseases.
On the social level, Resource Centres provide guidance and support to people living with rare dieases in accessing their rights, and offer social empowerment on different levels. Additionally, these centres provide training, guidance and information to different carers, including not only relatives but also social services providers and adapted education teachers. By serving all these groups, the Resource Centres have an essential role in the improvement of the global social care of people living with rare diseases.
Resource Centres are also essential in handling rare complex cases. These services can also coordinate with complex case managers located at other regional or national services, assuring proximity support to people living with rare diseases and their families. They can   also be considered complementary to medical services, helping to fulfil the multidisciplinary mission of Centres of Expertise, as suggested by the European Commission Communication on rare diseases: Europe's Challenges  and the Council Recommendation on an Action in the Field of Rare Diseases.

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