EUROPLAN - Guidance for National Plans and Conferences

EUROPLAN is a three year project which began in April 2008. Its main goal is to develop recommendations on how to define a strategic plan for rare diseases. Learn more about the EUROPLAN project

Below you will find links to downloadable documents relating to the EUROPLAN Project, including:

  1. EU Policy Documents on Rare Diseases
  2. EUROPLAN Guidance Documents for the National Plans
  3. EURORDIS Guidance Documents for the National Conferences
  4. Presentations for Working Group Chairs
  5. EUROPLAN National Conference Final Reports

1. EU Policy Documents on Rare Diseases

1.1 EC COMMUNICATION ON RARE DISEASES

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A policy document by the European Commission which intends to provide an integrated approach and a clear direction to present and future Community activities in the field of rare diseases, in order to further improve the access and equity to prevention, diagnosis and treatment for patients suffering from a rare disease throughout the European Union.

1.2 Council Recommendation on action in the field of rare diseases

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A legislative declaratory act on a rare diseases adopted by the Council of the European Union, i.e. by the representatives of the EU Member States. It engages them to act upon what it recommends. Although not legally binding, a Recommendation may bear a significant political weight. Recommendations are especially used for coordination actions or in certain policy areas, like public health, where the EU cannot issue binding acts (such as Regulations or Directives).

1.3 Presentation introducing the key elements of the Commission Communication on Rare Diseases and the Council Recommendations

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1.4 2009 Report on Initiatives and Incentives in the Field of Rare Diseases of the European Union Committee of Experts on Rare Diseases

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2. EUROPLAN Guidance Documents for the National Plans

2.1 EUROPLAN Brochure

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A brochure introducing the project

2.2 Presentation of Europlan by Domenica Taruscio

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2.3 EUROPLAN Recommendations for the Development of National Plans for Rare Diseases as of June 1st 2010

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Developed in the context of the EUROPLAN project, the ‘Recommendations’ are a ‘guidance’ document for the development of National Plans and Strategies on Rare Diseases, implementing the contents of the main European documents on rare diseases and in particular the aforementioned Council Recommendation

 

2.3 b EUROPLAN Recommendations for the Development of National Plans for Rare Diseases as of June 1st 2010. German version (Summary)

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2.4 EUROPLAN Indicators

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Set of Indicators developed in the context of the EUROPLAN project to assess initiatives in the field of rare diseases, in particular to monitor the implementation and evaluate the impact of national plans for Rare Diseases.

2.5 Evaluation of EUROPLAN Recommendations

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This evaluation form will be distributed to the participants of the conferences to have an evaluation of the recommendations based on four different criteria: completeness, significance, suitability and feasibility.

 

3. EURORDIS Guidance Documents for the National Conferences

3.1 Content Outline of EUROPLAN National Conferences

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Document describing the minimum requirements and the recommended content for the Workshops (Working Groups) of EUROPLAN National Conferences. In particular, it lists the main Themes, the Sub-Themes and the Open Questions to be dealt with in the Workshops.

3.2 Guidelines for WG CHAIRS and RAPPORTEURS

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Document describing the role and the tasks requested to Chairs and other facilitators of the Workshops of EUROPLAN National Conferences. The Guidelines are meant to ensure that all facilitators are aware of their pivotal role in the success of the conference and that they follow common and coordinated approach.

3.3 TEMPLATE Report

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Common template of the Final Report to be rigorously followed by all organisers of EUROPLAN National Conferences. It is structured along the Themes and the Sub-Themes of the Conferences’ Workshops.

3.4 EUROPLAN Conference Layout

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Document providing practical information on the organisation and layout of the National Conferences of EUROPLAN, notably objective of the Conferences, format, participants, steering committee, timing, communication and reporting.

3.5 What is a Council Recommendation?

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Memo summarising the meaning and legal value of a Council Recommendation, and explaining what it means having a EU rare diseases policy based on this type of legislative declaratory act.

3.6 Summary of the Clinical Added Value on Orphan Drugs (CAVOD)

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Summary of the main EURORDIS paper on the Clinical Added Value on Orphan Drugs (CAVOD), it aims at illustrating how can cooperation at the EU level facilitate national decisions and improve access to ODs. The cooperation will namely be based on the to-be-created Working Party on CAVOD, to be located ideally at the EMA.

3.7 Declaration of Common Principles on Centres of Expertise and European Reference Networks for Rare Diseases

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3.8 EURORDIS Policy Factsheet on Centres of Expertise

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3.9 EURORDIS Policy Factsheet on European Reference Networks of Centres of Expertise

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3.10 EURORDIS Policy Factsheet on National help lines for rare diseases

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3.11 EURORDIS Policy Factsheet on the European Network of Rare Disease Help Lines

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3.12 EURORDIS Policy Factsheet on Rare Disease Research

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3.13 EURORDIS Policy Factsheet on Respite Care

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3.14 Frequently Asked Questions on Off-Label Use of Medicines

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Presentations for Working Group Chairs

4.1 Theme 1 Governance & Monitoring a National Plan

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4.2 Theme 2 Definition Codification RD

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4.3 Theme 3 Research on Rare Diseases

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4.4 Theme 4 Standards of Care for Rare Disease Centres of Expertise and European Reference Networks

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4.5 Theme 5 Patient Empowerment and Service

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4.6 Theme 6 Sustainability

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4.7 Theme 7 Expertise at EU level

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5. EUROPLAN National Conference Final Reports

 

Page created: 06/05/2010
Page last updated: 21/09/2012