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Results

The response rate was 97% (31 out of 32 filled in the questionnaire).


STRENGTHS:

    stakeholders networking

    • 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

    knowledge

    • 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

    legal framework

    • 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



DIFFICULTIES FACED IN NP:

    local features and legal framework

    • 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

    knowledge and networking

    • 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



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