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 will open on 15th November 2018 at 2pm CET 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€)

Documents

3rd Multi-Stakeholder Symposium concept paper

EURORDIS Position Paper - Breaking the Access Deadlock to Leave No One Behind (EURORDIS Position Paper (January 2018)

Members of the Programme Committee

A full draft programme will be made available in the coming weeks.

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