Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
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Workshop 2 - Centres of expertise & Networks of experts

Workshop 2 - Centres of expertise & Networks of experts
"EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
Birthe Holm, Rare Disorders Denmark

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Workshop 2 - "EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers" Presentation Transcript

  • 1. Centres of expertise & Networks of experts Birthe Byskov Holm Rare Disorders Denmark Amsterdam May 14. 2011
  • 2. Centres of expertise & Networks of experts
    • Eurordis Policy – setting the scene
      • Eurordis Position Paper
      • Eurordis Declaration
      • Eurordis Fact Sheets
      • EU-Recommendation
      • Cross-border-directive
  • 3. Centres of expertise & Networks of experts
    • Annual Membership Meeting Berlin 2006
    • Rapsody-Project 2006-2008
      • National workshops in 11 EU MS
      • EU workshop, Prague 2007
      • EU Conference, Lisbon 2007
    • Eurordis Care 3 Survey 2008
    • Polka-Project
    • Participation working groups/dialogue
  • 4. Eurordis Policy Recommendations
    • “ Placing the patient at the centre of the system”
  • 5. Rare citizens in EU
    • Who are the patients?
      • 30 millions affected in Europe
      • 5.000 to 7.000 rare diseases
      • 3.500 affect only a few worldwide
      • 250 new diseases described per year
  • 6. BUT
  • 7. Rare citizens in EU
    • Limited no. of patients within each disease
    • General limited knowledge
    • Scarcity of expertise
    • High level of complexity
    • For many patients no cure or effective treatment available
  • 8. Eurordis Policy Recommendations
    • Fundamental elements
    • Professional qualifications/committment
    • Multidisciplinary and comprehensive approach
    • Coordination
    • Access and mobility
    • Empowerment of patients
    • Education and training
  • 9. Eurordis Policy Recommendations
    • Fundamental elements , continued
    • Main expectations
    • Collaboration: professionals/patients
    • Evaluation: method and criteria
    • Sustainability
    • Flexibility and inclusive approach
    • Pooling patients
  • 10. Multidisciplinary and comprehensive approach
    • Organising care through a multidisciplinary approach
    • ” Care” means integrating medical and social aspects at all levels
    • Call for coordinated patient/case- management, patient centred care, avoidance of disconnected care
    • Organisation of pathways by therapeutic areas?
  • 11. Coordination
    • Within and between:
    • Primary care, experts, local specialists, centres of expertise, network of experts, research activities, social and other services, paramedical services, information, patient organisations, reimbursements bodies, cross-border care?
    • Call for governance, structure, pathways, patient/casemanagement
  • 12. Access and mobility
    • ” expertise should travel rather than patients,who should travel in another MS only when they consider it necessary”
    • Challenges and barriers to overcome:
      • psychological, physical, technical,language, cultural, reimbursement, legal…
    • Call for respect, trust, pathways, cooperative atmosphere and attitude, infrastructures.
  • 13. Main expectations
    • Improvement of quality diagnosis and care
      • Best practices, protocols, guidelines integrating medical and social aspects
    • Ensuring equity (-post code lottery)
    • Real access and possibility to travel
    • Facilitate research
    • Call for structure, management and funding on national and EU level
  • 14. Sustainability
    • L ong term funding
    • Solid structures
    • Good governance
    • Cooperation with patients/organisations
    • Acknowledgement through evidence of better quality of life and cost-effectiveness
  • 15. Flexibility and inclusive approach
    • ” Patients in every European country should benefit from an ERN”
    • Diversity (in diseases, patients, healthcare-systems…)
    • Challenge or option?
    • Different strategy according to country size?
  • 16. Centres of expertise & Networks of experts
    • Sustainability
    • Tasks/”job description” according to the patients needs
    • Structure and governance
    • Role of patient organisations
    • Evaluation: Activities and effect
    • Flexible and inclusive approach setting the patient at the centre
  • 17. Thank you for your attention
    • Keep in mind to put the rare citizen in the middle.
    • Birthe Byskov Holm, Rare Disorders Denmark, bbh@sjaeldnediagnoser.dk
  • 18. Centres of expertise & Networks of experts
    • Cross-border directive (art.12):
    • ” ERN between health providers and centres of expertise…based on voluntary participation..contributing…accordance with the legislation of MS….open to new health providers…provided healthcare providers fulfil …conditions and criteria …set by the Commission”