The Voice of Rare Disease
Patients in Europe
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!
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 will include 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.
The first EURORDIS 'How to' webinar was led by Claudia Crocione on "People raising" and how to find, cultivate and motivate volunteers and took place in January 2018. Watch a recording of the webinar.
Information on upcoming webinars in the series and how to register will be posted on this page.
This page will be updated as and when there are upcoming public webinars. Previous webinars are made available as a video in the section below.