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4th Eastern European Conference for Rare Diseases and Orphan Drugs "TOGETHER FOR INTEGRATIVE APPROACH TO RARE DISEASES" [4th EEC RDOD] [20084253] - Conference
General objectives

The general objective of the conference is to present rare diseases as a common issue of
all policies at national/EU level requiring integrated approach by all stakeholders.
Specific objectives:
1. To invite participants from new member states (MS) and other Eastern European
countries (EEC) working in different areas of medicine, industry, finance, social policy
etc., concerning rare diseases;
2. To invite speakers sharing best practises on integrative approach to rare diseases;
3. To increase public awareness on rare diseases in new MS and EEC and add value to
the public health knowledge.
The theme of the 4th EEC RDOD correlates with the second priority area of the Health
programme 2008-2013.
Rare diseases are a common issue of all policies at national/EO level and cover variety of
aspects: science, medicine, industry, finance, health care policy, social policy. Different
groups of people are involved and good coordination and cooperation between those
groups are the guarantee for successful practice in the area of rare diseases which is a
challenge of the contemporary United Europe.
Rare diseases are complex and complicated problem requmng timing information,
relevant quality of treatment, adequate social policy. An integrative approach toward rare
diseases will increase the quality of life of people affected by rare disease, will prolong
the healthy life years across their life cycle.
The 4th EEC RDOD is a continued action in the field of rare diseases aimed to improve
knowledge, facilitate the access of the EEC to information on these diseases and add
value to the public health knowledge. The conference will become an Eastern European
unified stage where all stakeholders involved in the area of rare disease will meet and
manifest their good will to integrative approach toward the objective of rare diseases.

Expected achievements

Participants from all Europe (MS and non-members) will be invited to attend the 4th EEC RDOD at affordable price and conditions;
- The audience of the conference will include all different groups working in the field of rare diseases: medicine, industry, national and European institutions, authority and media;
- Speakers and lecturers will be among groups of national policy makers, medical and non-medical specialists, industry, patient associations and individual patients. They will present the benefit form the integrative approach to rare diseases;
- Representatives of those groups will give an overview on rare disease by oral presentations, stressing out on the specific aspects and proposing relevant actions in order to bring their views on need for integrative approach to rare diseases;
- The conference outcomes will be disseminated worldwide thus will improve the awareness on rare diseases;
- Directions of successful cooperation between all stakeholders will be produced.

Target audience

Based on the general objective of the conference to present rare diseases as a common issue of all policies at national/EU level requiring integrated approach the aim of the 4th EEC RDOD is to reach stakeholders from the following areas, coming from all EU member states and other EEC (e.g. Croatia, Former Yugoslav Republic of Macedonia, Turkey, Russia, Moldova, Ukraine, etc):
- national and EU governance and policy makers in healthcare, social policy, economy, education, Health Insurance Funds
- research institutions
- patients
- industry
- media
Speakers from EC and countries with experience in rare diseases for instance Italy, France, the Netherlands, UK, Belgium will be invited to share their experience, points of view and proposals in order to reach the general objective of the conference. Conclusions and recommendations will be disseminated in all EU member states and other EEC.
Personal invitations to eminent experts in rare diseases at EU level (Rare Disease Task Force members, COMP/EMEA members, DG SANCO experts, leaders of EU funded projects on rare diseases such as ORPHANET, etc.) will be send in order to establish the conference scientific committee. Such a scientific committee will broaden the European dimension of the conference by bringing their top level of expertise to participants.

Conference programme

First day (13 June 2009)

08:00-10:00 REGISTRATION
Expected official guests: Mrs. Zorka Parvanova - First Lady of Bulgaria, Dr. Evgeniy Zhelev - Minister of Health, Members of the Parliament
10:30-12:30 SESSION 1
Policy on rare diseases
Moderators: Rumen Stefanov, Stephanie Donahoe, Domenica Taruscio
Presentation duration: 20 minutes
Catherine Berens (DG Research)
Stephanie Donahoe (FDA/USA)
Domenica Taruscio (EUROPLAN)
Christel Nourissier (EURORDIS)
Karin Blumer (Joint EBE-EuropaBio Rare Diseases & Orphan Medicinal Products Task Force)
Rumen Stefanov (BAPES)
12:30-13:00 Press Conference
12:30-13:30 Lunch Break
13:30-17:00 SESSION 2
Sharing best practices on integrative approach on rare diseases in different countries
Moderators: Domenica Taruscio, Catherine Berens, Sonja van Weely, Iva Stoeva
Presentation duration: 10 minutes
Participating countries: Armenia, Bulgaria, Croatia, Czech Republic, Greece, Hungary, Italy, Macedonia, The Netherlands, Poland, Romania, Russia, Serbia, Slovenia, Turkey, UK.
Workshop 1 - Central and Eastern European (CEE) activities (part 1)
Moderators: Iva Stoeva, Natasa Bijelic, Borut Peterlin
Workshop 2 - Integrative management of rare diseases
Moderators: Domenica Taruscio, Ivan Ivanov, Elisaveta Naumova, Edmund Jessop
Workshop 3 - Access to orphan drugs in CEE countries
Moderators: Stephanie Donahoe, Rumen Stefanov, Tsveta Milanova
Workshop 4 - Rare tumors
Moderators: Asen Dudov, Aydin Dortok

Second day (14 June 2009)

09:00-10:00 POSTER SESSION
Moderators: Rumen Stefanov, Domenica Taruscio, Marianna Murdjeva, Sonja van Weely
10:00-12.30 SESSION 3
Models of integrative approach in different rare diseases
Moderators: Valeria Kaleva, Sarka Vejvalkova, Alexey Sokolov
Thalassemia - Vasili Berdoukas (Greece), Valeria Kaleva (Bulgaria)
Neuro muscular diseases - Ysbrand Poortman (WANDA)
Prader Willy syndrome - Uros Hladnik (Italy)
Lesch-Nyhan syndrome - Uros Hladnik (Italy)
Chronic myeloid leukemia - Stafan Goranov (Bulgaria), Vesselina Goranova (Bulgaria)
Epidermolysis bullosa - Edmund Jessop (UK), Ivelina Yordanova (Bulgaria)
Primary immunodeficiencies - Elisaveta Naumova (Bulgaria)
Workshop 5 - Central and Eastern European (CEE) activities (part 2)
Moderators: Grzegorz Wegrzyn, Ysbrand Poortman, Radostina Simeonova, Celine Lewis

Start date: 13/06/2009
End date: 13/01/2010
Duration: 7 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 28 365,00
Portfolio: Rare diseases