EURORDIS Membership Meeting 2015 Presentations
The EURORDIS Membership Meeting took place on 28, 29, 30 May 2015 in Madrid, Spain.
General Assembly
The General Assembly was followed by the EURORDIS Membership Meeting 2015 (EMM), with Capacity Building workshops.
Presentations
Plenary session: 29/05/2015
European Reference Networks for rare diseases (ERN)
Plenary session: 30/05/2015
Workshop 1: Research
Positive examples of initiatives at a national level
From patient empowerment to an open scientific community, the experience of “Determinazione Rara” in Italy, Sara Casati, UNIAMO, Italy 
E-Rare-3 - Project presentation, role of EURORDIS, opportunities for members, Mathieu Boudes, Operations and Projects Manager, EURORDIS 
Good examples and presentation of scenarios of coordination between POs and national funding agencies, Stephanie Robertson, Canadian Institutes of Health Research (CIHR), Canada 
Workshop 2: Access to Orphan Medicinal Products, treatment and care
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Inspiring actions and good measures from national plans/strategies and EUROPLAN national conferences, Flaminia Macchia

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First results of Access campaign survey, Rob Camp, DITA Task Force

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Engaging patients: CHMP Benefit Risk Evaluation and HTA Early Dialogues, François Houÿez, Treatment Information and Access Director, Health Policy Advisor, EURORDIS

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Off-label use and the information needs of patients with rare diseases, François Houÿez, Treatment Information and Access Director, Health Policy Advisor, EURORDIS

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How can we better prevent and manage medicines shortages? How can we better inform the public? François Houÿez, Treatment Information and Access Director, Health Policy Advisor, EURORDIS

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EURORDIS advocacy main messages to improve access: key concepts & new European processes integrating national and European levels, Yann le Cam, EURORDIS

Workshop 3: Centres of Expertise
Diversity of national landscapes for Centres of Expertise, 3 case studies:
- Denmark: Lene Jensen, Rare Diseases Denmark, Denmark 
- France: Paul Gimenes, Alliance Maladies Rares, France 
- Portugal: Marta Jacinto, Aliança Portuguesa de Associaçiones das Doenças Raras, Portugal 
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Patient organisations as part of the accreditation process of Centres of Expertise, Cor Oosterwijk, VSOP, Netherlands

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Patient organisations involvement in the development of care pathways, guidelines, transition from childhood to adult care, Amanda Bok, European Haemophilia Consortium

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A national perspective: experience of a national network from the UK on Centres of Expertise for neurofibromatosis , Dr Susan Huson, National Lead and Geneticist, UK

Workshop 4: Social Policy
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How member states and the Commission Expert Group are addressing social challenges in rare diseases, Raquel Castro

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Social policy proposals at the Spanish national EUROPLAN conference, Alba Ancochea Díaz, FEDER

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Care pathways: the experience of Sweden, Veronica Wingstedt de Flon, NFSD - Swedish National Agency for Rare Diseases , Sweden

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The role of patient organisations: case study of the Croatian Alliance for Rare Diseases, Vlasta Zmazek

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The role of case managing teams: case study of PRIOR, Prof. Dominique Bonneau, PRIOR, Maladies Rares, France

Page created: 08/06/2015
Page last updated: 27/03/2018