Presentations from the EURORDIS Membership Meeting 2016 Edinburgh

General Assembly

Workshop 1: European Reference Networks (ERN) and ePAGs

Speaker - Matt Johnson

Workshop 2: Rareconnect

Speakers - Robert Pleticha, Denis Costello & Michael Brudno

Workshop 3: INNOVCare, Rare Barometer & Advocacy

Speakers - Raquel Castro, Sandra Courbier, Dorica Dan, Stephanie Joker Nielsen & Annette Scoppetta

Workshop 4: ERNs, Research & Clinical Guidelines

Speakers - Domenica Taruscio, Karen Ritchie, Jenny Harbour, Lorna Thompson, Dr. Avril Kennan & SIlvia van Breukelan

 

Rare Diseases International annual meeting May 2016 presentations

Page created: 27/05/2016
Page last updated: 07/06/2016
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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