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

Information about upcoming EURORDIS webinars will be uploaded here.

EURORDIS 'how to' webinar series

The EURORDIS 'how to' webinar series for patient organisations provides interactive training on practical skills such as how to cultivate volunteers, social media and governance. Webinar speakers include fellow patient organisation leaders, topic experts and EURORDIS team members.

Each webinar includes an interactive Q&A, during which participants can ask speakers their own questions. The knowledge shared through the webinars will be useful to participants wanting to grow or improve the structure or communications of their own patient organisation.

The webinars are designed for participants from patient organisations or patients looking to set up patient organisations only.

Past webinars

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

 

 

Page created: 20/01/2016
Page last updated: 15/10/2019
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases