3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies (Brussels, 2019)

3.0 from 2 votes
Date: 13 - 14 February, 2019
Location: Brussels, Belgium


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

Registration is now open. If you are an ERTC Member, complimentary passes are available depending on your company's membership level. Please contact Anne-Mary Bodin ( for your company-specific registration link or to become an ERTC member.

For all other categories, please use the following links:

CORPORATE                                                                                                                                                   PATIENTS

Private companies, healthcare                                                                                                           Rare disease patients and patient 
industry, consultants (non ERTC                                                                                                                   advocates (75€)
members) (2500€) 

                                                                                                                                    POLICY, PAYER
& ACADEMIA                                                                                                                                            & REGULATOR                      

ERN representatives, academia,                                                                                                            Payer bodies, HTA agencies,
healthcare professionals                                                                                                                      National Competent Authorities,
or researchers (150€)                                                                                                                           regulators, policy makers or
                                                                                                                                                               government workers (150€)


If you don't belong to any of the above categories and you wish to attend, please contact Martina Bergna (

Pre-Symposium Webinars

Two webinars will take place ahead of this Symposium to provide the knowledge needed to effectively participate in discussions at the event. Both pre-registered Symposium participants and those of you who have not registered to attend are welcome to join the webinars.

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


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


Final Programme
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
RD Action 'State of the Art' Overview report 2018
Key outputs relating to ERNs, 2015-2018

Patient advocate fellowships

The application process for the patient advocacy fellowships are now closed.


Hotel accommodation is not provided by EURORDIS.

Recommendations for local hotels.


3.0 from 2 votes