European Conference on Rare Diseases - Lisbon November 27 - 28th 2007

• Mr Terkel Andersen, President Eurordis, Opening speech
• Mr Andrzej Rys, MD - Director EU Directorate C, DG Sanco
  
• Mr Antonio Fernando Correia de Campos, Ministry of Health of Portugal (tbc)

session 2
Building on successful European policies and moving forward

Chair person: Mr Terkel Andersen, Eurordis
2007 is a pivotal year for rare diseases. Member states and European Institutions are preparing the rendez-vous of national and European efforts in order to coordinate actions and propose recommendations to improve the live of people living with rare diseases. In this session, patients and their representatives, health care professionals and other stakeholders will have a great opportunity to debate with representatives of the European Commission, and thus make their presence felt in this event.

• New European Commission action in the field of Rare Diseases: European strategies and achievements
  • Mr Antoni Montserrat, European Commission DG Sanco
• Recommendations on public health action on Rare Diseases: new perspectives for European and national policies
• Round table With a Council representative (Portugal, Slovenia or France), and views of the DeEU Parliament, of DG Research, of EMEA / DG Enterprise, of the patients
• bate with the audience

session 3
Enhancing Member States rare disease policies

Chair person: Prof Luis nunes, Dona Estefania hospital
Member states’ policies and actions in the field of rare diseases are rapidly evolving. They share common features, they diverge in some areas. Session 3 will propose an overview of policies in three different domains: general policies, genetic testing and neo-natal screening, and research. Speakers from the European Commission Rare Disease Task Force, EuroGentest and E-Rare will present them and open the debates.

• Overview of Member States public health policies for rare diseases: a 2007 update§
  • Dr Ségolène Aymé, EU Task Force on Rare Diseases and Orphanet/ Inserm
• Overview of national research policies and collaboration between Member States
  • Dr Birgit Wetterauer, Ministry of Education & Research, Germany
• Debate

12.00 a.m.
Press conference

1.00 p.m.
Lunch break

session 4
Promoting national centres of expertise and European Reference Networks

Chair: Alexandra fourcade, Direction des Hôpitaux, France

• Building a European policy addressing citizens’ needs
• Dr Edmund Jessop, National Commissioning Group, NHS, United Kingdom
• Patients’ needs and expectations concerning access to health services - The EurordisCare3 study
• Paving the road for integrated policies – The Rapsody workshops outcomes
  • Ms Birthe Holm, Rare Disorders Denmark
• Debate

session 5
Mobility in Europe: Framing healthcare pathways to patients’ needs:

Chair person: Paula Costa, Rarissimas, Portugal
Rare diseases have no frontiers; they affect people from all parts of Europe and beyond. The construction of Europe and the establishment of a single market for goods and services, the abolition of internal frontiers and the exchange of information have created a new kind of traveller: the patient in search for quality care. In this session, patients will explain why they can be tempted to move to a different state when affected by a rare disease, health care professionals will explain how they organise health services for foreigners, and the impact of population displacement. Patients’ mobility needs are now fully part of the evolution of our health care systems.

• A Patient’s Testimony
  • Ms Alicja Rostocka, Cystic Fibrosis organisation, Poland
• Patient centred provision of healthcare for rare diseases
  • IAPO, International Alliance of Patient Organisations, Netherlands
• The new rare disease challenges of patient migration and EU enlargements (testing issues, incidence and consanguinity, higher/lower European prevalence link to enlargement …)
  • Dr Jill Clayton-Smith, St Mary Hospital, United Kingdom
• Facing patient mobility needs in Europe
  • Mr Nick Fahy, European Commission DG Sanco (tbc)
• Debate