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.

• Agenda 
• Activity Report 2013 EURORDIS  
• Financial Report 2013 EURORDIS 
• Candidates for election to the EURORDIS Board of Directors 
• Charter of the EURORDIS Volunteers 

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