Rare Diseases Task Force

1
Rare Diseases Task Force

• Working Group  Standards of Care 
• Expert group  Centres of Reference 
• www.rdtf.org
• Expert Group Meeting
• 1 Sept 06

2
Purpose of the meeting

• To review progresses since last report
• At EC level
• At country level
• To define the purpose and content of the 06
  report
• To agree on concepts and definitions
• To propose recommendations for future action at
  national and European level
• To agree on time table and publication

3
Summary of steps since last report

• Meeting with HLG to present the report Brussels
  Sept 05
• Meeting of the council of Ministers where
  conclusions were discussed Dec 05
• Meeting with HLG to present RDTF plan for action
  Brussels March 06
• Call for proposals for networks of CR
• Rapsody 05 contract signed with Eurordis
• Results of the 06 call for proposal

4
Statements consensus reached

• European added value of CR
• Need for disseminating the information on CR
• Definition of what is a CR
• High level of expertise / high volume of activity
  / capacity to provide expert advice /
  multidisciplinary approach / links with other
  centres and support groups
• Priority for networks of centres
• Rejection of hierarchy between ECR and CR

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Topics with disagreement (1)

• Balance benefice / malefice
• Positive
• Improving access for EU citizens
• Maximising cost /effectiveness
• Helping to share knowledge / training
• Negative
• Distant referral / long waiting list
• Psychological burden language isolation
• Loss of trust in local services
• Loss of interest by professionals outside the CR

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Topics with disagreement (2)

• Scope of activity
• Disease centred
• By disease
• By medical specialty
• Technology centred
• Surgery / investigation / highly specialised
  treatment
• Social support centred
• Polyhandicap / familial dimension /

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Topics with disagreement (3)

• Geographical reach of centres
• European centres
• National centres
• Regional centres
• VS
• Level of designation / funding
• EU
• Member states
• Regions

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Topics with disagreement (4)

• Centres of reference
• National centres
• Regional centres
• where patients may be referred
• VS
• Networks of centres of reference
• Characterised by communication
• Production of guidelines
• Shared expertise for patients

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Topics with disagreement (5)

• From the concepts to the reality
• Diffusion of the concepts
• Publication of experiences
• Follow-up of national initiatives
• Definition of responsibilities
• European networks
• European Commission
• bilateral contracts between countries
• CR member states or regions