The 6th Rare Disease Day took place on 28 February 2013. Although a disease or condition might be labeled as “rare”, the number of people in Europe suffering from a rare disease is estimated at over 30 million. Almost all people with rare conditions face common problems; delays in diagnosis, lack of investment into research and inequalities in access to treatments and care. Rare disease day gives the TSA an opportunity to join together with other rare disease organisations to pump up the volume. This year’s Rare Disease Day slogan “Rare Disorders without Borders” emphasises the need for international cooperation Learn more about it.
Please watch the wonderful Rare Disease Day 2013 video. Share it with your friends and networks on Facebook, twitter and by sharing the link through e-mail.
“Like” the video and show your solidarity.
This year the TSA has participated in events to mark Rare Disease Day in the Westminster and Scottish Parliaments, the Welsh Assembly and the Royal Holloway Hospital. We will be continuing to lobby for support for TSC services and access to treatments as well as for investment in TSC research throughout the year. And we’ll be putting out a call for people to get involved with campaigning – lets make 2013 a year when the voice of the TSC community is heard loud and strong.