Christel Nourissier National Policies Balkan Area Cluj 06 09

www.eurordis.org NATIONAL POLICIES FOR RARE DISEASES IN BALKAN AREA : THE FRAMEWORK Christel Nourissier General Secretary, EURORDIS Balkan Congress Rare Diseases_26-27 June 2009

www.eurordis.org A new EU Legislative and Policy Framework For Rare Diseases

A legal basis • The Commission Communication on Rare Diseases (adopted 11 December 2008) • The Council Recommendation on Rare Diseases (9 June 2009) Chapter 1 To Member States : Establish and implement plans or strategies for rare diseases …or explore appropriate measures for rare diseases in other public health strategies, • in order to aim to ensure that patients with rare diseases have access to high quality care, including diagnostics, treatments, habilitation for those living with the disease and, if possible, effective orphan drugs • take note of the development of guidelines and recommendations for the elaboration of national action for rare diseases… in the framework of the ongoing European Project for Rare Diseases National Plans Development (EUROPLAN) 3 Cluj-Napoca,26-27 June 2009

The Recommendation on Rare Diseases 4

What is EUROPLAN ? 5

Collection and exchange of information A 5 years plan already evaluated in France National plans in Bulgaria and Romania Many national initiatives that we shall discuss today… 6

WP 8 (co-ordinated by EURORDIS) Objectives Organising National Conferences to present and discuss the transferability at the local level of the EC Recommendation and EUROPLAN Recommendation Commission Communication on RD EUROPLAN recommendations on & RD National Plan Council Recommendation on RD Common policy guidelines shared in all EU countries 7

Activities of WP8 • Creation of an advisory Group EURORDIS - National Alliances-EuroPlan: 6 advisors  • Identification of 15 National Conferences on RD after call for proposal  • Support to the organisation of 15 National Conferences on RD 8

Participation to Call for Conferences                9

Lay out of national conferences The perfect blend The main ingredient: The NATIONAL SITUATION …and an essential requirement: To let emerge COMMON ELEMENTS which are anchored to the COUNCIL RECOMMENDATION and the EUROPLAN RECOMMENDATIONS The final result: The NATIONAL PLAN for RD 10

Themes for Working Groups The Working Groups’ discussion themes will be related to the areas of the COUNCIL RECOMMENDATION 11

Today’s focus • Prenatal / Neonatal screening; Is screening covering the entire country? Which diseases are screened? • Diagnostic genetic services Are the genetic tests cost covered by the state? • Treatment of patients with RD:  Orphan drugs  Rehabilitation  Social care • Availability of relevant information on RD • Training for professionals • Support to the activities of patient organizations • • Established services for integration of patients in daily life (ex. center for integration through occupational therapy)? Who is funding these centers? Do you think that might be established a supportive environment to fund the socio medical services for RD patients which prove their efficiency? • Cross border cooperation/ access to medical services in RD 12

Christel Nourissier National Policies Balkan Area Cluj 06 09

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