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New EUCERD Joint Action Document informs Member States on guiding principles for implementing training for social services providers

May 2014

Children with caregiverThe new Guiding Principles on Training for Social Services Providers focuses on the need to better prepare social care providers to work with people living with a rare disease, given that care provided via social services and policies is instrumental to the quality of life of patients and their families.

This document, the latest outcome of the European Union Committee of Experts on Rare Diseases (EUCERD) Joint Action: Working for Rare Diseases, informs Member States (MS), rare disease experts, patient organisations and others involved in relevant policy-making and advocacy at European, national or regional levels by providing a set of guidelines for the implementation of training programmes for social services providers.

The guiding principles specify the elements that training for social services providers should include and delineates a set of measures needed to establish efficient training at the MS level.

Experts of the multi-stakeholder group involved in the development of these guiding principles consider that such training should be collaborative across different sectors, including Centres of Expertise, university hospitals, Specialised Social Services, patient organisations, and other relevant stakeholders. MS are also reminded that these training programmes need sustainable and adequate funding and should be included in national rare disease plans/strategies. Of particular interest is the list of recommended Contents that training for Social Service Providers should include.

Besides seeking to increase the quality of services provided, training of social services providers aims at facilitating the integration of people living with a rare disease into services that are not specific to rare diseases, thus promoting the optimisation of resources at MS level.

EURORDIS, as a partner in the EUCERD Joint Action and leader of a Work Package on Specialised Social Services and the Integration of Rare Diseases into Social Policies, collaborated with experts from within the EUCERD and the rare disease community to produce the Guiding Principles, which took shape during multi-stakeholder discussions at a dedicated workshop held in Copenhagen in October 2013.

In July 2014, the Guiding Principles will be distributed to the newly formed Commission Expert Group on Rare Diseases.

Louise Taylor, Communications and Development Writer, EURORDIS