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

europabio_0.jpg                                HOPE_0.jpg                                  PGEU.jpg

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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases