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

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

Registration

Registration is now open through the following links: 

  • Private Companies, Healthcare Industry, Consultants (non ERTC members) => please register HERE (2500€)
  • Rare Disease Patients and Patient Advocates => please register HERE (75€)
  • ERN Representatives, Academia, Healthcare Professionals or Researchers => please register HERE (150€)
  • Payer bodies, HTA Agencies, National Competent Authorities, Regulators, Policy Makers or Government Workers => please register HERE (150€)

If you are an ERTC Member, you will receive all information on how to get your complimentary passes via email shortly.

If you wish to become an ERTC member, please contact Anne-Mary Bodin (anne-mary.bodin@eurordis.org).

Documents

Patient advocate fellowships

Are you a patient or patient representative? Apply for a fellowship to attend the Symposium.

EURORDIS is offering up to 20 fellowships for patient advocates, to include a registration fee waiver and covering accommodation for one night and return trip economy fare travel for a maximum of 400 € per fellowship (upon submission of original receipts).

Apply here by 30 November 2018. Fellowships will be awarded by an ad-hoc committee and the selected fellows will be notified by 15 December 2018.Attendance to this Symposium will require some preparatory work (pre-Symposium webinars and reading materials), a good knowledge of health technology assessment (HTA) and a good level of English.

For information: EURORDIS Fellowship application evaluation scale

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

 

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 rare, Rare Diseases International est une initiative d'EURORDISRare 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