miércoles, 9 de noviembre de 2016

2nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies

EURORDIS - The Voice of Rare Disease Patients in Europe
Eurordis, Rare Diseases Europe
The Voice of Rare Disease
Patients in Europe

2nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies


22 - 23 February 201, Hotel Le Plaza, Brussels, Belgium
An exceptional two-day event not to be missed!
EURORDIS and partners will bring together patient advocates, payers, HTA bodies, academics, clinicians, policy makers, investors and industry representatives to provide a platform for dialogue, a neutral ground and open environment for discussion. All stakeholders will have the opportunity to express their views and observations in order to reach sustainable and durable solutions to improve patient access to rare disease therapies across Europe.

Download the draft programme (PDF)

Register button

This unique event aims to:
  • Identify common conditions to facilitate increased uptake of therapies for rare diseases;
  • Build and seek convergence on current and emerging initiatives;
  • Recognise the need and nurture the willingness for flexibility within the healthcare system;
  • Discuss how to work together and where there are differences of opinion;
  • Investigate reasonable ways to resolve rare disease patient access issues in an equitable way for society and
  • Pave the way to a fair approach with acceptable compromises from each stakeholder.
This Symposium will build on elements from the 1st Multistakeholder Symposium. The dialogue will continue and we will work collectively towards a mutually-acceptable, fair and optimal approach forward.

2. Venue

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

3. Official Partners


4. Programme Committee Members & Advisors

Members of the Programme Committee:
Lieven Annemans, Professor of Health Economics, Ghent University
Nicola Bedlington, Secretary General, EPF
Kate Bushby, Act. Res.Chair of Neuromuscular Genetics, RD-Action
Ivana Cattaneo, Director, Market Access and Public Affairs Rare Disease Franchise, Oncology Region Europe at Novartis EuropaBio
Karen Facey, Evidence Based Health Policy Consultant, HTAi
Benjamin Gannon, Head of International Government Affairs & Public Policy, Vertex
Yann Le Cam, Chief Executive Officer, EURORDIS
Jean-Louis Roux, Public Affairs Director, EURORDIS
Chris Sotirelis, Trustee Advisor, Thalassaemia UK
Francis Pang, Head, Global Market Access, Amicus Therapeutics UK Limited
Sheela Upadhyaya, Associate Director - Highly Specialised Technologies, NICE
Stijn Vanacker, Analyst – Global Healthcare, Robeco

Advisors to the Programme Committee:
Menno Aarnout, Executive Director, AIM
Charles Barker, Partner, CMI Concord Group
Jill Bonjean, Resource Development Director, EURORDIS
Julia Chamova, Director, Global Networks, ISPOR
Hans-Georg Eichler, Senior Medical Officer, EMA
Pascal Garel, Chief Executive, HOPE
Virginie Hivert, Therapeutic Development Director, EURORDIS
Elizabeth Vroom, President Dutch Duchenne Parent Project and Chair of UPPMD
Russell Wheeler, trustee and patient advocate, Leber’s Hereditary Optic Neuropathy Society (LHON Society)

5. Hotel & Travel Information

EURORDIS has booked a block of rooms and has negotiated special rates at the Hotel Le Plaza for the nights of 21 and 22 February 2017. 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

6. Preparatory documents

Information coming soon

7. Preparatory webinars

Information coming soon

8. Contact

Please address all questions to Emilie Zingg: emilie.zingg@eurordis.org

9. Register

Places are limited, so please register now for this important event for the rare disease community!

  • All patient representatives will have their fee waived for this event. If you are a patient representative, you can also apply for a limited number of EURORDIS fellowships to cover the cost of your travel and hotel for your attendance to the event. To apply please email anja.helm@eurordis.org. Applications will close on 15 December 2016.
  • If you are from a payer body, HTA agency, national competent authority, regulator or a government worker, please contact emilie.zingg@eurordis.org to request your registration form.
For ERTC Members, pharmaceutical industry, consultants, investors, healthcare professionals, academics and researchers, please register via the system below.

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