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

 

 

 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Созданная по инициативе EURORDIS сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases