Welcome
Mr Terkel Andersen

Welcome
Mr Fernand Sauer

Welcome
Mr Mars di Bartolomeo

Clinical networks as a response to scarcity of databases and guidelines for best practices
Dr. Cornelia Zeidler

Diagnosis and public health : Diagnostic delays - EurordisCare2 survey
Dr. Madelon Kroneman

A patient’s testimony
Marianna Lambrou

A health professional’s testimony
Prof. Helena Kääriäinen

Disability : are financial compensations adequated?
Rosa Sanchez de Vega

Reference Centres: The Danish model
Torben Gronnebaeck

Reference centres: The French model
Dr. Alexandra Fourcade

Comparison of national plans and practices
Dr. Domenica Taruscio

Trans-border access to care
Prof. Dr. Piet van Nuffel

Building cooperation between stakeholders to improve research: A multi-disciplinary approach
Prof. Anthony Holland

Transfer from academic research to industrial development
Prof. Pascal Schneider

Strengthening co-operation between academia and industry
Dr. Valérie Thibaudeau

Targeting research to improve quality of life New therapeutic avenues
Prof. Stanislas Lyonnet

European Clinical Research Infrastructures Network : A response to the needs of the clinical trial community
Prof. Christian Ohmann

Results from a survey illustrating difficulties in access to care in Europe
Elisabeth Wallenius

Access and availability of molecular genetic tests : Uncovering the rationales for transborder testing
Dr Elettra Ronchi

Medical devices and equipment
Liz Gondoin Goedert

Education: educational implications of rare diseases
Anders Olauson

Help phonelines and written information
Lesley Greene

Internet resources
Prof. Jörg Schmidtke

Training families and carers
Anders Olauson

Training families and carers
Britta Nilson

Diseases with no code : The perspective of patients
Annet van Betuw

Why and how to code and classify rare diseases
Ségolène Aymé

Status report and health benefits after five years of orphan drug legislation
Melanie Carr

Views of a representative academic
Dr Bruce Morland

Views of a patient representative
Yann Le Cam

Views of a representative from industry
Catarina Edfjall

Availability of orphan medicinal products in Europe
François Houÿez

Views of the health care systems
Prof. Peter Littlejohns

Views of a national competent authority
Dr. Domenica Taruscio

Views of the European Commission
Agnes Saint Raymond

Proposals from the task force on rare diseases
Dr. Ségolène Aymé

A society where rarity does not affect opportunity
Christel Nourissier

A word of the European Commission
John Ryan