sábado, 19 de diciembre de 2015

Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies

Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies

Eurordis, Rare Diseases Europe

The Voice of Rare Disease
Patients in Europe

Multi-stakeholder Symposium on Improving Patient Access to Rare Disease Therapies

Value Determination, Appraisal, Pricing & Reimbursement

An exceptional two-day event not to be missed! 24 - 25 February 2016, Brussels. Please note that registration is required for this event.
EURORDIS and partners will bring together industry, patient leaders, academics, regulators and payers to discuss the current state of play and how to shape a more effective way to address value determination, appraisal, pricing and reimbursement of orphan medicines. In line with the EURORDIS Round Table of Companies, this symposium aims to improve patients' access to rare disease therapies throughout Europe.

Download the preliminary programme (PDF, 515 KB)

Symposium Objectives

This meeting on the topic of HTA is envisaged as a two-stage process, with a second symposium in 2017 on a more consensual approach to the new solutions discussed throughout 2016. For this 1st meeting, the overarching aim is to gain common understanding and agreement on the determinants of value, and of the assessment and appraisal methods for orphan medicinal products, by:
  1. Bringing all participants to a common understanding of issues/challenges of access to rare disease therapies (webinar/pre-reads to be circulated before meeting);
  2. Sharing existing and new processes to recognise which ones work best;
  3. In view of the 2017 symposium,  agreeing on a structured approach forward and a set of solutions to explore.


Boulevard Adolphe Max 118 - 126, Brussels, Belgium
Tel. + 32 2 278 01 00
Metro Station: Rogier


Registration will be open on 4 January 2016. Details on how to register will be uploaded to this webpage.
For more information please contact Anne-Mary Bodin at: anne-mary.bodin@eurordis.org

Official Partners


Programme Committee Members & Advisors

Members of the Programme Committee:

Lieven Annemans
Professor of Health Economics
Gent University
Ri De Ridder
Director-General of Healthcare
Karen Facey
Evidence Based Health Policy Consultant
Glasgow University
Ruediger Gatermann
Director, Healthcare Policy and External Affairs Europe
CSL Behring
Josie Godfrey
Public Policy and External Affairs
Sobi - Swedish Orphan Biovitrum AB
Laura Gutierrez
Senior Director European Government Relations and Public Policy
Adam Heathfield
Co-chair EFPIA - EuropaBio Task Force
Senior Director, International Policy
Christian Hill
Managing Director
Map Biopharma
Virginie Hivert
Therapeutic Development Director
Yann Le Cam
Chief Executive Officer
Vinciane  Pirard
co-chair EFPIA - EuropaBio Task Force
Director Public Affairs
Genzyme Europe BV

Advisors to the Programme Committee:

François Houÿez
Treatment Information and Access Director / Health Policy Advisor
Kristina Larsson
Head of Office – Orphan Medicinal Products
European Medicines Agency (EMA)
Solange Rohou
ADAPT SMART consortium (EMA)
Director Regulatory Affairs
Ad Schuurman
Head of the Business Contact Centre & International Affairs
National Health Care Institute (former CVZ)
The Netherlands
Cees Smit
Patient advocate
European Genetic Alliances Network (EGAN)
The Netherlands
Chris Sotirelis
Patient advocate
UK Thalassaemia Society

Hotel & travel information

EURORDIS has booked a block of rooms and has negotiated special rates at the Hotel Le Plaza for the nights of 24 and 25 February 2016. If you wish to make a reservation at the Hotel Le Plaza, please contact the reservation department directly (Tel. +32 2 278 01 00 / reservations@leplaza.be).
Single occupancy: 195 Euros per night including breakfast*
Double occupancy: 224 Euros per night including breakfast*
*City Tax is not included in the room rate - a supplement of 9.85 € per room per night will be applied
Details of other hotels close to the venue will be provided here soon.

Preparatory documents

Coming soon

Preparatory webinar

Information coming soon


Please address all questions to Anne-Mary Bodin at anne-mary.bodin@eurordis.org

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