The workshop held on 6-7 December 2012 in Zalau, Romania, was organised through the EUCERD Joint Action (N° 2011 22 01).
The workshop focused on the topic of Specialised Social Services for rare diseases (RD). It brought together experts with first-hand experience of the various types of services which exist in Europe, as well as policy makers at national and EU levels and representatives of patient organisations. EURORDIS, leading this work package of the EUCERD Joint Action, provided an update on its progress in mapping Specialised Social Services for RD and increasing their visibility at the national and European levels. Presentations were delivered on the establishment and day-to-day operations of four Specialised Social Services providers: each provider represented a different type of service, namely Therapeutic Recreation Programmes, Respite Care Services, Resource Centres and Adapted Housing (in this case Group Housing). Participants also discussed funding issues for new and existing Services, within the context of on-going initiatives in the wider RD world. The ultimate goal of the workshop was to discuss and revise a set of guiding principles to which Specialised Social Services for people living with RD should adhere.