EURORDIS Membership Meeting 2014 Presentations
The EURORDIS Annual General Assembly took place on 8 May 2014, from 9:00 to 11:00, in Berlin, Germany.
The General Assembly was followed by the EURORDIS Membership Meeting 2014 (EMM), with Learning from Each Other sessions before lunch and Capacity Building workshops in the afternoon.
Programme 
Presentations
Learning from Each Other sessions: meet, learn, discuss (4 parallel sessions)
Crowdfunding 
Dr Nicolas Sireau, Chairman and CEO, AKU Society, Chairman and Co-founder, Findacure
Education & Employment Initiatives (summary coming soon)
Alba Ancochea Diaz, FEDER, Spain
Surveys: An Advocacy Tool? 
Anna Kole, EURORDIS Registry and Biobanks, Project Manager
RareConnect
Denis Costello, EURORDIS, Robert Pleticha, EURORDIS
Workshop 1: Patient Involvement in Best Practice Guidelines Development: Improving Rare Disease Care
Presentation of the importance of European Best Practice Guidelines: RARE-Bestpractices Project and the involvement of EURORDIS 
Juliette Senecat, EURORDIS
Case study Guidelines for Epidermolysis bullosa 
Dr Avril Kennan, Debra Ireland
Case study: Guidelines for Myeloma, Myeloma Patients Europe 
Eric Low, Myeloma Patients Europe
Workshop 2: Getting Your Views on Ethical, Legal and Social Issues in Research
Presentation of the main outcomes of Registries patient survey 
Anna Kole, EURORDIS Registry and Biobanks, Project Manager
The bigger picture: combining genetic data with clinical data - the example of RD - Connect (presentation coming soon)
Identifying ethical, legal and social issues in data integration and sharing 
simon Woods, Peals (Policy, ethics & life sciences) Research centre, newcastle university, UK
Gathering the patient's view: focus groups (presentation coming soon)
Workshop 3: Patient Advocacy To Improve Access to Orphan Medicinal Products
Overview of EURORDIS advocacy proposals to develop more Rare Diseases therapies and improve patient's access 
Yann Le Cam, Chief Executive Officer, EURORDIS
Overview of what is changing on HTA in Europe for Rare Diseases and EURORDIS 
François Houÿez, EURORDIS
Potential and limits of patient progressive access adaptive licensing applied to Rare Diseases 
Pauline Evers, Policy Officer, EMA, Committee for Orphan Medicinal Products, UK
A Patient's Perspective on the new Cystic Fibrosis Drug Kalydec 
Katie Murphy, Research & Development Officer, Cystic Fibrosis Ireland
Workshop 4: Integration of Rare Diseases into Social Policies
What to consider when implementing Rare Disease training programmes for social services providers 
Raquel Castro, EURORDIS
Essential training Orphanet Encyclopaedia on Disability & Orphanet Disability Project 
Myriam De Chalendar, Marie Daniel and Ana Rath, Orphanet, France
Case study Training programmes for professionals working with People Living with Rare Diseases 
Lisen Mohr, Frambu, Norway
Identifying social challenges for people living with a rare disease discussion of the EURORDIS draft position paper 
Raquel Castro, EURORDIS
Page created: 13/05/2014
Page last updated: 26/05/2014