Rare Diseases and Neonatal Screening: Views of Parents and Patients
- Date: 26.4.2009 — 26.4.2009
- Venue: Hotel Tristar Olympik, Prague - Czech Republic
- Category: Conferences and Seminars
- Theme: Employment, Soc. Pol., Health and Cons. Affairs
This workshop is integrated within the "The 6th ISNS European Regional Meeting in Neonatal Screening" conference.
- Organizers of the Event: Czech Ministry of Health together with ISNS
- Contact: Prof. Milan Macek Jr., M.D, D.Sc., Charles University Prague - 2. School of Medicine and Faculty Hospital Motol, milan.macek.jr@lfmotol.cuni.cz
- Website: www.guarant.cz/isns
Programme:
A/ EU and National activities in the area of rare diseases and their neonatal screening:
1/ Milan Macek (Charles University, Prague) – Introduction and presentation of the EU Council Reccommendation on a European action in the field of rare diseases
2/ Antoni Montserrat (DG Sanco, Luxemburg) – DG SANCO: Activities in the field of rare diseases
3/ Stanislava Panova (Ministry of Health, Prague) – Czech National strategy on rare diseases
4/ Iva Stoeva (Sophia, Bulgaria) – Bulgarian national plan on rare diseases
B/ Expert view on neonatal screening: Ethical and social aspects of neonatal screening:
5/ Gerard Loeber (RIVM, The Netherlands) – Ethical and social issues related to neonatal screening
6/ Martin Linder (Heidelberg, Germany) – Pediatrician´s view on neonatal screening
C/ Patient support groups view of neonatal screening:
7/ Christel Nourissier (Eurordis, France) – Eurordis action for rare diseases at EU level and building of consensus on neonatal screening
8/ Cor Oosterwijk (EGAN, The Netherlands) – EGAN view on neonatal screening
9/ Carmen Corbea (Romanian PKU association, Timisoara, Romania) – PKU screening in Romania: ups and downs
10/ Neli Kostadinova (Bulgaria) – CEEGN view on neonatal screening
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