EMM Amsterdam 2011 - Conferences and 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 concept, definitions and terminology"
"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"
 
"Sharing expertise: transfer of experience from patient organisations to doctors and between patient organisations"
"BURQOL-RD"

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,"
 

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: 24/05/2011
Page last updated: 24/10/2013
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases