miércoles, 11 de junio de 2014

Speaker presentations | ECRD 2014 : The European Conference on Rare Diseases & Orphan ProductsSpeaker presentations

Speaker presentations | ECRD 2014 : The European Conference on Rare Diseases & Orphan ProductsSpeaker presentations

A vital event for the rare disease community 
Don’t miss the chance to download the speaker presentations, available online and on the mobile app 

Speaker presentations

Opening Session

Plenary Session

THEME 1 : Improving Healthcare Services

0101 - Centres of Expertise – Part 1 (Models & Practical Examples)
0102 – Centres of expertise – Part 2 (Designation and Evaluation)
Opening Remarks: Centres of expertise – Part 2 (Designation & Evaluation)Enrique Terol, Session Chair
0103 - European Reference Networks (ERNS)
Opening Remarks: European Reference Networks (ERNS), Till Voigtländer, Session Chair
0104 - Addressing the Challenges of Healthcare Pathways
 0105 - Advances in Diagnostic Possibilities for Undiagnosed Patients
0106 - Improving the Quality of and Access to Diagnostic Services

THEME 2 : Knowledge Generation & Dissemination

0201 - The Role, Risks and Relevance of Registries in Shaping Therapy Development to 2020
0202 - A Collaborative Model to Progress Knowledge and Research
0203 – Making the Invisible Visible: the Coding of Rare Diseases in Health Information Systems
0204 – Delivering Help and Support in a Virtual World: What will work best?
0205 - Knowledge at the Point of Care: Getting the facts just in time or just in case
0206 - Hype, Help or Harm? The Impact of Media Promotion of Rare Diseases

THEME 3 : Research from Discovery to Patients

0301 - Shaping Rare Disease Research Policy
0302 - Addressing the Gaps in Research at International Level to Identify Opportunities
0303 - Incentives to Create a Favourable Eco-System
Opening Remarks: Incentives to Create a Favourable Eco-SystemSerge Braun, Session Chair
Care for RareKym Boycott
0304 – Breakthroughs in Science
0305 - Pre-Competitive Tools and Resources / Public-Private Partnership in the Area of Rare Diseases (including Innovative Medicines Initiative)
0306 - Whose Data is it? Stimulating Research and Removing Barriers

THEME 4 : State of the Art and Innovative Practices in Orphan Products

0401 – Current Landscape of Policy Development on Orphan Products and Rare Disease Therapies
0402 - Facts on Current Patient Access Challenges to Orphan Products
0403 - EMA-Health Technology Assessment (HTA) interfacing on Rare Disease Therapies
0404 – Shortages in Authorised Medicines for Rare Diseases
Regulatory PerspectiveBrendan Cuddy
0405 – Understanding of Orphan Therapies Off-Label Uses and their New Challenges
0406 - Empowering Patient Advocates in Drug Development

THEME 5 : Emerging Concepts & Future Policies for Rare Disease Therapies

0501 - Early Dialogue and Horizon Scanning of Product Development to Address Unmet Medical Needs
0502 - How to Share a Better Framework for Orphan Drug Development: EMA/FDA Collaboration
0503 - Progressive Patient Access Schemes and Patient Involvement in Benefit-Risk Assessment
0504 - Mechanism of Coordinated Access (MOCA) and Transparent Value Framework, Managed Entry Agreements
0505 - Emerging Ideas for Sustainable Access to Orphan Medicinal Products
0506 - Rare Disease Treatments Beyond Medicinal Products

THEME 6 : Beyond Medical Care

0601 - Idenitifying Specific Social Challenges of Rare Diseases
0602 - Different Approaches to the social Challenges of Rare Diseases: Social Policy
Orphanet Disability ProjectsMyriam de Chalendar
0603 - Concrete Solutions to Social Challenges: Essential Tools for the Integration of Rare Siseases into Social Services
ÅgrenskaAnders Olauson
0604 - Can People Living with a Rare Disease be Independent? Inspiring Personal Stories

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