EURORDIS Membership Meeting 2014 Presentations

Membership Meeting posterThe 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
 
 
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