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

Final Programme

Pre-Symposium Webinars

Two webinars have taken place ahead of this Symposium to provide the knowledge needed to effectively participate in discussions at the event.

 

First pre-symposium webinar

24 January, 15.00 - 16.00 CET. 

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. 

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

The event provided a platform for 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. Attendees were able to 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.

Main profiles at the event:

  • 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

Accommodation

Hotel accommodation is not provided by EURORDIS.

Recommendations for local hotels.

Official partners

EPF.jpg                       efpia_2.jpg                         eurocope.jpg

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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

 

 

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases