EURORDIS TV gathers the best rare disease and orphan drug videos into one convenient venue

EURORDIS TVThe Internet contains thousands of videos documenting various activities and testimonials from the rare disease community, many of which can be accessed via websites such as YouTube and Vimeo. A growing number of these professionally made films and high-quality documentaries are scattered across the Internet, sometimes appearing in inappropriate contexts, next to advertisements for unregulated medical treatments or with suggested videos which have little to do with the target audience, for example. The newly launched EURORDIS TV identifies and gathers the best rare disease-related videos into one convenient venue, organised into nine specific channels: News & Current Issues; Living with a Rare Disease; Patient Groups; Explaining Rare Diseases; Research; Orphan Drugs; Health Policy; Rare Disease Day; and EURORDIS Events.

EURORDIS TV currently gives priority to videos in English language (or those with English language subtitles) but suggestions for videos in other languages which can be featured on a special channel dedicated to non-English videos are welcome.

Each video on EURORDIS TV can be shared via Facebook or Twitter or embedded in a website or blog. We encourage you to share videos via your social media networks or your patient group. Each week a new "Video of the week" will be highlighted on the EURORDIS homepage, as well as via the weekly EURORDIS eNews and the EURORDIS Facebook and Twitter networks.

If you, your patient group, or somebody you know has a video for EURORDIS TV please email us at Ideally the video should be published on YouTube or Vimeo, but if not, and you can provide permission to publish the original video, we would like to hear from you.


Author: Louise Taylor, Communications and Development Writer, EURORDIS

Page created: 10/04/2013
Page last updated: 22/08/2013
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases