3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies

Let’s make a pact to ensure patients’ sustainable access to rare disease therapies

13-14 February 2019 
Crowne Plaza Brussels – Le Palace, Rue Gineste 3, 1210 Brussels, Belgium
Metro Station: Rogier

Advanced programme

 

REGISTER NOW!

Registration is now open.  If you are an ERTC Member, complimentary passes are available depending on your company's membership level. Please contact Anne-Mary Bodin (anne-mary.bodin@eurordis.org) for your company-specific registration link or to become an ERTC member.

For all other categories, please use the following links: 

CORPORATEPATIENTS

Private companies, healthcare industry, consultants (non ERTC members) (2500€)Rare disease patients and patient advocates (75€)


HEALTHCARE
PROFESSIONALS
& ACADEMIA
POLICY, PAYER
& REGULATOR

ERN representatives, academia, healthcare professionals or researchers (150€)Payer bodies, HTA agencies, National Competent Authorities, regulators, policy makers or government workers (150€)

If you don’t belong to any of the above categories and you wish to attend, please contact Martina Bergna (martina.bergna@eurordis.org)

Pre-Symposium Webinars

Two webinars will take place ahead of this Symposium to provide the knowledge needed to effectively participate in discussions at the event. Both pre-registered Symposium participants and those of you who have not registered to attend are welcome to join the webinars.

 

First pre-symposium webinar

24 January, 15.00 - 16.00 CET. 

Register here

Covering topics in breakout sessions 2 and 3. Webinar speakers:

  • Anna Bucsics, University of Vienna; Project Advisor, Mechanism of Coordinated Access to orphan medicinal products (MoCA)
  • Simone Boselli, Public Affairs Director, EURORDIS-Rare Diseases Europe

 

Second pre-symposium webinar

31 January, 15h00 - 16h00 CET. 

Register here.

Covering topics in breakout sessions 1 and 4. Webinar speakers:

  • Victoria Hedley, Newcastle University, Rare Disease Policy Manager, Newcastle University John Walton Muscular Dystrophy Research Centre, MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine
  • Simone Boselli, Public Affairs Director, EURORDIS-Rare Diseases Europe

Overview

An exceptional two-day event not to be missed!

Attend to take part in discussions with patient advocates, policy makers, payers, HTA bodies, clinicians, healthcare industry executives and investors on how to improve patients’ access to rare disease medicines. Learn more about actions planned ahead of the European elections in May 2019.

Views expressed by participants will go towards producing a roadmap document, which will offer practical and implementable solutions and set out the commitment of all players, working towards the goal of accelerating the development of, and guaranteeing timely and universal access to, rare disease therapies.

This roadmap will be broadly disseminated to European and national institutions ahead of the May 2019 European parliamentary elections.

This event is recommended for:

  • Patient advocates
  • Payers, health technology assessment (HTA) bodies, and national Competent Authorities
  • Policy makers and regulators
  • Clinicians and academics
  • Pharmaceutical and biotech industry leaders
  • Consultants and Investors

Documents

Patient advocate fellowships

The application process for the patient advocacy fellowships are now closed.

Accommodation

Hotel accommodation is not provided by EURORDIS.

Recommendations for local hotels.

Official partners

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eahp_logo_0.jpg                           htai_logo.png         ispor_logo

 

Contact

Questions regarding this event? Please contact Martina Bergna, Events Junior Manager: martina.bergna@eurordis.org

 

 

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases