miércoles, 7 de enero 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
Aspiramos a tener 100 servicios sociales especializados identificados en 2015; ¡sólo faltan 6! Envía sugerencias a raquel.castro@eurordis.org

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.

What are Specialised Social Services?

When referring to Specialised Social Services, it is important to remember the different types of services that have been identified at EU level.
The services can be listed as:
  • Therapeutic Recreation Programmes (TRP)
  • Respite Care Services (RCS)
  • Adapted Housing (AH)
  • Resource Centres (RC)
  • Other habilitation services supporting People Living With Rare Diseases (PLWRD) in their daily life or in their complementary therapeutic procedures, increasing autonomy and quality of life of PLWRD.
Each tab above is dedicated to a type of Specialised Social Service, including a definition of the service, the list of services, a factsheet and case studies or guidelines.

Why are they needed?

Specialised Social Services are instrumental to the empowerment of PLWRD and improvement of their well-being and health. For people living with a rare, chronic and debilitating disease, care should not be restricted to medical and paramedical aspects, but should also take into account social support, inclusion and psychological or educational development. Therapeutic Recreation, Respite Care, Adapted Housing Services and Resource Centres are essential in providing this vital support to PLWRD. The patient and volunteer testimonies available in each section recount the importance and the significant outcomes of these services for patients, families and society at large.

What is the role of EURORDIS with respect to Specialised Social Services?

Currently EURORDIS is involved in the European Committee of Experts for Rare Diseases (EUCERD) Joint Action Working for Rare Diseases (2012-2015), as leader of the work package dedicated to Specialised Social Services and Integration of Rare Diseases into Social Policies and Services.
Within the framework of this project, EURORDIS is responsible for mapping the services available in Europe and promoting awareness-raising activities for the purpose of highlighting the need for these services. EURORDIS will also address the issues concerning the training of the staff/volunteers working at these services.
For a complete insight into the need for Specialised Social Services and on the work developed under the EUCERD Joint Action, readEURORDIS Paper "Rare Diseases: addressing the need for SSS and integration into social policies".

Case Studies will be compiled after visiting different experienced and established services. The collection and sharing of Guidelines will be promoted via workshops and the exchange of information among services, authorities and other partners.

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