EMM Amsterdam 2011 - Workshops


 

Workshop 1 "Newborn screening"

"The EU tender on Newborn Screening for rare disordersin Europe"
 

Workshop 2 "Centres of expertise and Network of experts"

"Presentation of the concept, definitions and terminology"
"EURORDIS Policy recommendations based on EURORDIS Declaration, Fact Sheets & Position Papers"
"Feedback from the 15 National Conferences on Centres of Expertise"
 

Workshop 3 "Registries"

"Presentation of the Epi-Rare project"
"Outcome of the RD Task Force and EPPOSI Workshop"
"Presentation of the Epi-Rare project"
"Feedback from the 15 National Conferences on Registries"
 

Workshop 4 "Research"

"EURORDIS Research Policy recommendation"
"Presentation of the RD Platform fact finding study on the trends and determinants of rare disease research"
"Feedback from the 15 National Conferences on Research policy"
 

Workshop 5 "Brainstorming and Policy Development session:
Social aspects"

"Feedback from the 15 National Conferences on social aspects"
"Presentation of Social Challenges of RD patients in the Joint Action on Rare Diseases"
"The Norwegian Model"
 

Workshop 6 "Brainstorming and Policy Development session:
Training, information and education of MDs"

"Feedback from the 15 National Conferences"
"Training package on RD for medical students"
"Case study: Italian Training for MDs,"
"Sharing expertise: transfer of experience from patient organisations to doctors and between patient organisations"
"BURQOL-RD"
 

Workshop 7 "Brainstorming and Policy Development session:
Prevention"

"The International Federation for Spina Bifida and Hydrocephalus’ primary prevention study"
"Folic acid prevents neural tubes defect"
"EUROCAT Study on Prevention of Congenital Anomalies"
"Prevention in the Spanish National Plan for Rare Diseases"

Page created: 25/05/2011
Page last updated: 25/05/2011
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases