Presentations from the EURORDIS Membership Meeting 2019 Bucharest

EMM 2019 Plenary: Holistic and Integrated care

Launch of Position Paper

Inequalities & Opportunities

How to make the best use of the position paper for a bigger impact

Workshop 1 : How to make the best use of the EURORDIS Position Paper on Holistic Care

Speakers: Raquel Castro, Lene Jensen

Workshop 2: Why create a Community Advisory Board

Speakers: François Houÿez, Rob Camp, Natacha Bolaños, Karen Druckman, Andreas Hager, Matteo Scarabelli

Workshop 3: European Reference Networks – The Eastern European Countries Dimension

Speakers: Matt Bolz-Johnson, Dr. György Pfliegler, Dr Birute Tumiene, Ms Petia Stratieva

Workshop 4: Contribute to the next 10 years of Rare Disease Policy: Rare 2030 Foresight Study

Speakers: Anna Kole, Giovanna Giuffrè

Page created: 21/05/2019
Page last updated: 23/05/2019
 
 
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