EURORDIS webinars

EURORDIS webinars take place to update member organisations or the wider rare disease community on a new activity, to engage participants in a consultation or to educate on a new topic that is relevant to rare disease patients, such as genome editing. They are designed to be interactive so that participants can ask questions via a chatbox or their microphone.

Upcoming webinars

Rare2030 Young Citizens Debate

28 October 2020 at 14:00 CET, registration. For more information please contact anna.kole@eurordis.org

All-ePAG Online meeting

Private Meeting

5-6 November 2020, for more information please contact anne-laure.aslanian@eurordis.org

How to illuminate buildings for Rare Disease Day

19 November 2020, 9:00 CET, registration.

How to organise action at national level to integrate ERNs

15 December 2020 at 16:00 CET, registration

External webinars with EURORDIS speakers

Raising awareness on managing competing interests in a multi-stakeholder environment: Guidance to patients and engaging stakeholders

EURORDIS Speaker: Maria Cavaller

27 October at 15:00 and 16:00 CET, link: https://us02web.zoom.us/j/87121852547, password: 042515

World Orphan Drug Congress Europe

EURORDIS Speaker: Yann Le Cam

2-5 November 2020, registration

Recommendations on required capabilities for patient engagement
Patient engagement in medicines development: Recommendations on how to find the right match for the right patient engagement activity

EURORDIS Speaker: Virginie Hivert

9 November at 15:00 and 16:00 CET, link: https://us02web.zoom.us/j/84477715765, password: 771465

Past webinars

Previous webinars are made available as a video in the section below. 

 

 

Page created: 20/01/2016
Page last updated: 26/10/2020
 
 
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