Commission Expert Group on Rare Diseases (CEGRD) has recently published recommendations to support the incorporation of rare diseases into social services and policies. These recommendations mainly focus on empowering health services’ attempt to facilitate integrated care provision to enable them to play the role they need to play in supporting the incorporation of Rare Diseases (RD) specificities into mainstream social and support services, within a holistic and person-centered approach and a human rights perspective.
These recommendations were developed within the European Union Committee of Experts on Rare Diseases (EUCERD) Joint Action (N° 20112201) and are based on the outputs of several key publications and multi-stakeholder consultations. Leading up to the adoption of the recommendations on social services provision, there was emphasis placed by Officials on the importance of the CEGRD following up on delivery and measuring impact after an appropriate period. Below are the list of recommendations:
1.The incorporation of RD specificities into mainstream social services and policies is a necessary element to be considered in future National Plans and Strategies (NP/NS) for RD and should be incorporated when existing NP/NS are evaluated and revised.
2. Centres of Expertise have a key role in facilitating integrated care provision in line with the EUCERD recommendations on Quality Criteria for Centres of Expertise on Rare Diseases
3. European Reference Networks for RD have a key role in facilitating integrated care provision in line with the EUCERD recommendations on European Reference Networks for Rare Diseases (10)23 and the Directive on patients’ rights in cross-border healthcare
4. Member States (MS) should promote measures that facilitate multidisciplinary, holistic, continuous, person-centered and participative care provision to people living with rare diseases, supporting them in the full realization of their fundamental human rights.
5. MS should promote measures that support patients/families affected by RD to participate in decisions regarding their care plan and their life project
6. Transfer of information between care providers, within the limits of data protection legal frameworks, should be promoted to support holistic care provision.
7. MS should promote coordination and networking between all parties involved in the care provision of persons affected by RD, including public, private and civil society organizations as well as between providers and patient/disability organizations.
8. RD specificities should be integrated into national systems assessing a person’s level of functioning, in line with the United Nations Convention on the Rights of Persons with Disabilities.
9. The elaboration and dissemination of good practices for social care in RD should be encouraged.
10. Socio-economic research in the field of RD care provision/organization should be supported both at MS level and at European Union level.
OrphaNews April 19, 2016
Read the recommendations