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European Porphyria Network: améliorer la prise en charge des patients et de leur famille

European Porphyria Network: améliorer la prise en charge des patients et de leur famille. APRIL 1st 2007 – MARCH 31st 2010. Pourquoi?. La plupart des professionnels de santé n'ont aucune expérience du diagnostic et du traitement des patients porphyriques

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European Porphyria Network: améliorer la prise en charge des patients et de leur famille

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  1. European Porphyria Network: améliorer la prise en charge des patients et de leur famille APRIL 1st 2007 – MARCH 31st 2010

  2. Pourquoi? La plupart des professionnels de santé n'ont aucune expérience du diagnostic et du traitement des patients porphyriques La disparité et l'insuffisance de l'information sur les porphyries

  3. How? • Expérience de l'EPI • Opportunité SANCO DG (EU luxembourg)

  4. EPNET objectives Fournir une documentation validée et consensuelle sur toutes les porphyries et dans toutes les langues Standardiser l'information sur l'usage des médicaments Évaluer la performance des centres de référence européens par un contrôle de qualité externe Collecter des données épidemiologiques pour les autorités de santé nationale et européenne

  5. Qui?

  6. Associate partners AP-HP France Deybach Jean-Charles Univerzita Karlova v Praze Czech Republic Martasek Pavel Universita degli Studi di Milano Italy Cappellini Maria Instituti Fisioterapici Ospitalien Italy Biolcati Gianfranco Cardiff SAS Porphyria Service UK Badminton Mike Instytyt Hematologii I Transfuzjologii Poland Lipniacka Agnieszka Orphan Europe Sarl France Parker Samantha Erasmus MC Universitair Medisch centrum The Netherlands De Rooij Felix University of Helsinki Finland Kauppinen Raili King’s college Hospital UK Marsden Joanne Haukeland University Hospital Norway Sandberg Sverre Karolinska University Hospital Sweden Harper Pauline Academisch Ziekenhaus Maastricht The Netherlands Frank Jorge Hospital Clinic I Provincial de Barcelona Spain To Jordi Porphyria Centre Saxony Germany Stoelzel Ulrich

  7. Collaborating partners Hospital Universitario 12 de Octubre Spain Salamanca Rafael Hem-Onc-Center Germany Petro Petrides University of Szeged Hungary Kiss Maria ULB Belgium Cotton Frederic St James Hospital Ireland Crowley Vivion Stadtspital Triemli Switzerland Minder Elisabeth

  8. WP: 1,2 & «3 ADVISORY BOARD Coordinator JC Deybach Part-time administrative officer Part-time programme manager STEERING GROUP WP4 Information WG Mike Badminton WP5 Drugs WG Atle Brun WP6 EQA lab WG Sverre Sandberg WP7 Data collection WG Raili Kauppinen Part-time pharmacist in 4 centres Part-time EQA manager Part-time database manager Project coordination

  9. La face publique du projet Porphyia-europe.org Drugs-porphyria.org

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