The EUCERD has chosen to examine the area of specialised social services for rare diseases (RD), as concerns both the provision of specialised rehabilitation services for RD as well as the integration of RD into mainstream social policies and services.
This work will include:
- Identifying and mapping of existing specialised social services such as therapeutic recreational programmes , respite care services and other rehabilitation services (e.g. adapted housing) and the identification of good practices;
- Facilitating access to information on specialised social services for RD patients and their families;
- Defining guiding principles for Member States and stakeholders on why and how to develop training sessions for social services providers;
- Promoting the integration of RD into social policies and services by identifying existing social guidelines and defining guiding principles for social care in the field of RD.
|Therapeutic Recreation Respite Care Services Adapted Housing Resource Centres|
- Workshop on guiding principles for social care, 9-10 October 2014, Frambu Centre, Norway – organised through the EUCERD Joint Action N°2011 22 01
- Workshop on training of social service providers, 10-11 October 2013, Copenhagen – organised through the EUCERD Joint Action N°2011 22 01
- Workshop on Specialised Social Services for RD, 6-7 December 2012, Zalau, Romania – organised through the EUCERD Joint Action N°2011 22 01
- Background document: EUCERD Joint Action: Rare Diseases – Addressing the Need for Specialised Social Services & Integration into Social Policies (November 2012)
- Workshop report: Guiding principles for Specialised Social Services (December 2012)
- EUCERD Joint Action: Guiding Principles for Specialised Social Services (April 2013)
- Workshop report: Training for social services providers (October 2013)
- EUCERD Joint Action Guiding Principles on Training for Social Services Providers (April 2014)
- EUCERD Joint Action: Examples of Training Programmes for Social Service Providers
- Workshop Report: Guiding principals for social care (9-10 October 2014)
Other related resources:
Find out more about specialised social services for rare diseases through the fact sheets below produced by EURORDIS and the dedicated area of their site:
Work theme leader :
Dorica Dan – EURORDIS (Romania)
Dorica Dan is the founder of the Romanian Prader Willi Association and the Romanian Alliance for Rare Diseases. She is a board member of the European Organisation for Rare Diseases EURORDIS and is a member of the EUCERD, representing patient organisations.
Dorica Dan will be supported by Raquel Castro (EURORDIS).
The sole responsibility for the information provided in this site and the reports produced via the EUCERD Joint Action N°2011 22 01 published on this site lies with their authors: the Executive Agency for Health and Consumers is not responsible for any use that may be made of the information contained therein.