10 mai 2018 - Session 0602. What global opportunities do we unlock when all people living with a rare disease have access to a timely accurate diagnosis ...
RDI Annual meeting (open to members and non-members of RDI)
16:30-18:30
EURORDIS General Assembly (members only)
19:00-21:00
Patient Groups Welcome Reception
Friday 11 May 2018 Opening Session
09:00-09:45 09:45-10:15
Coffee Break
10:15-12:30
-
Plenary Session
12:30-13:30
Lunch
13:00-14:00
Poster Sessions & Shire Satellite symposium
14:00-15:30
1/ Structuring the Research
2/ Breakthrough medicines
and Diagnostic Landscape
on the horizon
Session 0101 Transformations in diagnostics: how research and European Reference Networks are re-shaping the diagnosis landscape
Session 0201 Breakthrough products and priority medicines
3/ The Digital Patient Session 0301 Everything is technically possible
5/ Economical Perspectives
6/ Global Rare Equity:
what matters, matter
in Rare Diseases
Are we there yet? Session 0601 How can we leverage global policies and global agencies to explicitly support rare diseases recognising diversity and ensuring equity?
Session 0401
Session 0501
Quality of life - what really
Economic impact of rare
matters to patients & how to measure it
diseases on patients, families and society
Poster Sessions
15:30-16:30
16:30-18:00
4/ Quality of Life: Making
Session 0102 Research: from an idea to the real world
Session 0202 Current EU cooperation on Health Technology Assessment: EUnetHTA
Saturday, 12 May 2018 1/ Structuring the Research
.
and Diagnostic Landscape Session 0103 Innovative funding partnerships: challenges and opportunities
Session 0203 The Future of Health Technology Assessment Cooperation
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.
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Session 0303 EC Digital Single Market Strategy
. .. . . . .
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Session 0403 Disability: unveiling the invisible double-burden of rare diseases
Session 0503 A paradigm shift in value frameworks for access
Session 0603 IRDiRC next horizon 2027: Research from vision to the real world
Session 0504 Enhancing patient access to care: new approaches to pricing and funding
Session 0604 Building the Rare Disease knowledge and information eco-system through better connections
Coffee Break & Poster Sessions
10:30-11:00
11:00-12:30
Session 0602 What global opportunities do we unlock when all people living with a rare disease have access to a timely accurate diagnosis and optimised care?
Reception (for all participants)
18:00-19:00
09:00-10:30
Session 0502 Economic dynamics of therapy development for rare diseases
Session 0402 How can quality of life contribute to decision making?
Session 0302 Societal, legal and ethical framework
Session 0104 Patient involvement: Is it enough to be an 'expert by experience? r
Session 0204 Orphan medicinal products in the pipeline: what can we see coming and disappearing?
Session 0304 European Reference Networks as a future model of healthcare
Session 0404 Integrated care: bringing together health & social care, two sides of the same patient
12:30-13:30
Lunch
13:30-14:30
"Soap box" Plenary Session featuring Flora Giorgio, Head of Sector Health Technology Assessment, DG SANTE B4, European Commission.
14:30-16:00
Session 0105 Genome editing debate: Are we heading towards a world without rare diseases?
Session 0205 Preparing the contribution of patients in regulatory / Health Technology Assessment procedures
Session 0305 Patients and the digital revolution
Session 0405 From best practices to next practices: building a collaborative vision
16:15-17:00
Closing Plenary Session
17:00-17:30
Farewell Coffee
Session 0505 A look into the future - how to ensure sustainability access to rare diseases care in 2030?
Session 0605 What are our key enablers to bring a vision for equity and optimised care globally to people living with a rare disease locally?
10 mai 2018 - 2/ Breakthrough medicines on the horizon. 3/ The Digital. Patient. 4/ Quality of. Life: Making what matters, matter. 5/ Economical. Perspectives in Rare. Diseases. 6/ Global Rare. Equity: Are we there yet? 14:00-15:30 ... on Health Tech
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