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

The Voice of Rare Disease
Patients in Europe

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

22 - 23 February 2017, 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)

1. Symposium Objectives
2. Venue
3. Official Partners
4. Programme Committee Members & Advisors
5. Hotel & Travel Information
6. Preparatory Documents
7. Preparatory Webinars
8. Contact
9. Register

1. Objectives of the 2nd Multi-Stakeholder Symposium

The ultimate goal is to reach affordable, sustainable and long-lasting solutions to improve patient access to rare disease therapies. We recognise that there is not one simple solution, but instead numerous initiatives, some of which are already in development and in some cases are being piloted, and others, which are new but promising.

There are many voices advocating for change in healthcare. Those that have the biggest impact understand the need to include all stakeholders in the process. This symposium is a truly multi-stakeholder platform for dialogue and will provide a neutral, open environment for discussion. All stakeholders will be encouraged to engage in conversation to express the interests, needs, concerns, and aspirations of the group that they represent and to respond to all others with respect, understanding, and creative ideas. We will build on existing work streams and progress on elements from the first symposium.

The goal of this second symposium is to develop a cooperative process for reaching mutually acceptable solutions that respect all stakeholders, that enhance and sustain trust, and that build mutual understanding of each other’s perspectives and expectations.

The symposium aims to:

• Recognise stakeholder issues on assessing new treatments, providing patient access, and ensuring affordable and sustainable healthcare;
• Elicit the important interests of each stakeholder group;
• Identify current and emerging initiatives and, through them, investigate together reasonable, innovative ways to work collaboratively across stakeholder groups to resolve rare disease patient access issues in an equitable way for each stakeholder and for society as a whole;
• Pave the way to a fair, inclusive and on-going multi-stakeholder approach with the potential to generate sustainable, affordable and actionable improvements in patient access to rare disease therapies

In order to reach a broader audience, this symposium will include live video streaming of the plenary session, interactive voting and Tweet Chat.

Following the symposium, a preliminary draft plan of action developed by EURORDIS and Programme Committee members, as well as the broader multi-stakeholder Committee of Drafters, will be disseminated to key decision makers in each stakeholder group for consultation. This dialogue and the proposed processes will continue with successive, improved drafts and consultations, giving all stakeholders ample opportunity to express their views and shape the resulting plan of action.

2. Venue

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

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.