Rare Disease Day 2013 – Watch the video!

February 8, 2013 in News

Join us in celebrating the 6th international Rare Disease Day on 28 February 2013.

On 28 February 2013 we commemorate 6 years of Rare Disease Day and once again rare disease communities around the world are joining hands to show solidarity and generate awareness. Rare Disease Day is coordinated by Eurordis with national alliances across 24 European countries and was celebrated by 63 countries worldwide in 2012. This year several new countries– including Bahrain, Iceland, Israel, Palestine and Singapore-will also be partipipating. For the past 6 years, this day has been a significant benchmark of how far we have come in our quest to help rare disease patients. It is also a day of reflection to acknowledge how much more can be achieved if we work collectively. In the spirit of global collaboration, the slogan this year “Rare disorders without borders” expresses the need for reaching across and sharing knowledge and resources to further the cause of the rare disease community.

This year’s official video for Rare Disease Day 2013 has been received enthusiastically, with more than 13,000 views on youtube! Several people provided their services free of charce to produce this video which is available in 10 languages. Patient organisations featured in this video are members of the Associazione Italiana Sindrome di Noonan, Duchenne Parent Project and Xeroderma Pigmentosum Society. Other than participating in the events and activities organised by the rare disease community in your part of the world, you can also upload your story and photos on the Rare Disease Day website.

A prelude to the Rare Disease Day was the meeting in Brussels on 26 February 2013 where “Eurordis and Members of European Parliament Ms Antonyia Parvanova (Bulgaria) and Mr Cristian Silviu Buşoi (Romania) co-hosted a multi-stakeholder policy event to examine how different policy measures can help improve access to therapies for rare diseases”. This meeting precedes the vote in the plenary session of the Parliament for “EU Transparency Directive on medicinal products”. The participants highlighted “the need for transparency around pricing and reimbursement of medicinal products” and discussed how faster, more equitable access to medicines can be achieved.

Take a look at the official Rare Disease Day website to find the activities being organised in your region.