STRENGTHS:
- Involvement of all stakeholders /wide range of inputs / cooperation among various actors (Gvt, clinicians, patients organisations, Parliament, industry …)
- Work team /working groups involving different representatives of institutions and organisations (pts, professionals, researchers ..)
- Empowerment of patients / public consultations
- Partnership between MoH and National Alliance for RD
- Steering group set by Ministry (professionals and patient organisations)
- Good relationships between patient organisation and State Administration
- National Action League for people with RD (NAMSE): set up by MoH, MoEduc, Ntl Alliance of Patient Groups for RD
- Identification of centres for RD
- National study on diagnostics, treatment and rehabilitation/overview of local health and social situation
- EUROPLAN recommendations/ international practice in planning process /building on recommendations from other MS
- Well educated members of the team and personal reputation
- Exchange good practice on organisational development
- Information centre for RD
- Recognition that RD are a priority for the MoH
- Potential for long-term financing
- Funding health care and research on RD
- Legal base for Orphan Drugs
stakeholders networking
knowledge
legal framework
DIFFICULTIES FACED IN NP:
- ECONOMIC CONTRAINTS: Budget/economic crisis/lack of funds/
- LOCAL FEATURES: Large Country/small population; Devolution: build on what is already there/fragmented health system
- LEGAL FRAMEWORK: Changes of State Administration/uncertain environment/lack of MoH stability; Inadequate legislative framework; Policy on pricing and reimbursement of OD /Accessibility of orphan drugs
- NETWORKING AND COMMUNICATION: Getting the involvement of all stakeholders/ each stakeholder has its own interest and viewpoint / bad communication among some stakeholders; Lack of multidisciplinary teams to cover all needs; Different interests of different institutions; Fragmentation of competencies for RD; Lack of a national network of specialised medical centres.
- KNOWLEDGE: Statistical data gathering and analysis; Low level of research; Finding good solutions on how to run registers; Awareness of doctors on early diagnosis; Low knowledge of RD in GP/lack of clinical pathways
local features and legal framework
knowledge and networking
OTHER OBSERVATIONS:
- Involvement of different stakeholders
- European interest in action for RD
- Identification of the correct indicator with targets and timeline to evaluate the effectiveness of the implemented recommendations to improve health and quality of life of patients with RD
- Elaboration of good indicators to evaluate the NP
- Societal crisis against handicapped, sick and old people
CONCLUSIONS:
- Knowledge of the local situation, in addition to the technical knowledge on RD, represent the basis for NP
- Stakeholders involvement and networking are the key factors for developing a NP
- Political willingness is a must: the existence of an inducive legal and institutional environment facilitates NP
- Networking, stakeholders involvement and communication represent key factors for developing NP/NS and deserve special attention
- Elaboration of good indicators is still a weak point in NP for RD