Development of a Complex Communication System between the Actors Involved into the Management of Rare Diseases in Romania and Europe - Workshop

Wednesday, 20 February 2008

Morning - Arrival of guests

ROMANIAN HAE-NETWORK AND THE ROMANIAN ALLIANCE OF RARE DISEASES

13.00-15.00
Lunch

15.00-15.45
Dumitru Moldovan, MD, PhD,Romanian HAE Network (PDF)

15.45-16-30
Maria Puiu, MD, PhD, Dorica Dan, The Romanian Alliance of Rare Diseases (PDF)

16.30-16-45
Coffee break

16.45-18.45
Discussions

19.00
Dinner

 

Thursday, 21 February 2008

CONTRIBUTIONS TO THE EUROPEAN AND REGIONAL COOPERATION IN THE MANAGEMENT OF THE HEREDITARY ANGIOEDEMA

9.00-9.30
György Füst, MD, PhD, Technological Developments for the Diagnosis of Hereditary Angioedema (HAE) and other immuno-deficiencies (PDF)

9.30-10.00
Discussions

10.00-10.30
Lilian Varga, MD, PhD, HAE Patients Health Care and Management in East Europe (PDF)

10.30-11.00
Discussions

11.00-11.15
Coffee break

11.15-11.45
Henriette Farkas, MD, PhD, Hungarian HAE Network (PDF)

11.45-12.15
Peter Spaeth, MD, PhD, The Interconnection of General Practitioners - Patients - Laboratories in the Management of the Hereditary Angioedema in Switzerland (PDF)

12.15-13.00
General Discussions

13.00-15.00
Lunch

EUROPEAN REGISTRY OF HEREDITARY ANGIOEDEMA

15.00-16.00
Marco Cicardi, MD, PhD, The concept of European Patient Registry for Hereditary Angioedema (PDF)

16.00-18.00
Discussions

19.00
Dinner

 

Friday, 22 February 2008

RARE DISEASES: PUBLIC CONSULTATION LOUNCHED BY THE EUROPEAN COMMISSION AND AVAILABLE TYPES OF FINANCIAL SUPPORT

10.00-11.30
Jo Van Vaerenbergh, MD, PhD, Hans Cools, MD, PhD, Project Development for FP7. Idea Conceptualization

11.30-11.45
Coffee break

11.45-13.15
Jo Van Vaerenbergh, MD, PhD, Hans Cools, MD, PhD, Project Development for FP7. Scientific and Technological Development of the Idea.

13.15-14.00
Discussions

14.00-15.00
Lunch

MANAGEMENT OF RARE DISEASES

15.00-15.45
Jo Van Vaerenbergh, MD, PhD, Hans Cools, MD, PhD, Project Development for FP7. Idea Implementation. Proposal writing

15.45-16.45
Discussions

16.45-17.00
Coffee break

17.00-17.45
Discussions

17.45-18.00
General conclusions

19.00
Dinner