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New Guiding Principles optimise the capacity of Specialised Social Services to integrate people living with rare diseases

May 2013

Children at Therapeutic ProgrammeA set of ten Guiding Principles for Specialised Social Services integrating people living with rare diseases is now available in one comprehensive document, an outcome of the European Union Committee of Experts on Rare Diseases (EUCERD) Joint Action: Working for Rare Diseases.

EURORDIS, as leader of a EUCERD Joint Action Work Package dedicated to Specialised Social Services for rare diseases, has collaborated with experts from within the EUCERD and the rare disease community to produce the Guiding Principles.

Specialised Social Services include Therapeutic Recreation Programmes, Respite Care Services, Adapted Housing Services, and Resource Centres. Such services are instrumental to the empowerment of people living with rare diseases and the improvement of their well-being and health. 

With the overarching aim of informing good practice standards in the development and on-going activities of Specialised Social Services integrating people living with rare diseases, the Guiding Principles address specific areas: Rights and Personal Identity; Person/Family Centeredness; Holistic, Comprehensive, Integrated Approach; Governance Structure; Organisation and Administration; Evaluation and Continuous Improvement of Quality; Connection to Centres of Expertise/Medical Institutions; Admission Procedures and Individual Assessment; Training of Staff and Volunteers; and Rare Diseases and Health Care Needs.

The Guiding Principles derive from a dedicated Workshop organised by EURORDIS, which brought together over two dozen experts from 16 different countries and various stakeholder groups within the rare disease community including the EUCERD, Specialised Social Services, National Authorities, National Patient Alliances, field social workers, and academia.

Rather than providing a precise model for the Specialised Social Services, the Guiding Principles are flexible and adaptable to the situation of each service. Intended for Specialised Social Services providers and funders, Member State Health and Social Authorities, Centres of Expertise, patient representatives, and patients and families, the Guiding Principles seek to optimise the capacity of each Specialised Social Service to integrate people living with rare diseases, allowing current and future services to maximise their benefit both to patients and their families, and to society in general.

Louise Taylor, Communications and Development Writer, EURORDIS