The European Organisation for Rare Diseases (EURORDIS) has excellently coordinated the online presence of the Rare Disease Day, the awareness-raising event converging around the slogan “Rare but Equal".
Social networks were promoted to enhance communication and tighten connections between people. I think that promoting rare disease awareness through these channels is very important and noble.
EURORDIS has indeed set a praiseworthy example:
- being on twitter as @rarediseaseday : I remembered of this day thanks to a retweet of a doctor I follow
Any twitter user can connect and raise awareness using the hashtag #raredisease.
- livestreaming at http://www.livestream.com/eurordis with the opportunity to ask questions via chat. The recordings of the presentations will be available at the same link.
- the livestream was embedded on the landing frontpage of the event's facebook page.
Social networks can indeed give a fundamental support for important causes.
I believe that in the future years the web will greatly emerge as a daily tool to connect people and physicians that deal with rare conditions. I hope that we will take great steps towards being more and more networked.