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February 2013

Share the magic of the 2013 Rare Disease Day official video


When it comes to rare diseases, it’s a small world after all! The official Rare Disease Day 2013 video takes the viewer on a magical journey to demonstrate the urgent need for global cooperation in the field of rare diseases.

The video takes its inspiration from the Rare Disease Day 2013 slogan “Rare Disorders without Borders” and captures the need for the international rare disease community to work together to find solutions. Not only are patients and families frequently isolated by their rare disease – but health professionals, researchers, policymakers and other stakeholders also often feel alone in the battle to understand, diagnose and treat rare diseases. 

To raise awareness for those living with rare diseases, Rare Disease Day takes advantage of all available communication tools – including video. Employing a technique that mingles stop motion animation with live action cinematography, video director Carlo S. Hintermann has created an ethereal, poignant video which appeals to viewers of all ages. 

EURORDIS takes the occasion to thank director Carlo Hintermann, production companies Citrullo International and Digital Room, and the team of over twenty persons who donated their time to produce this year’s video. EURORDIS also thanks the patients who volunteered to appear in the video (learn more): fourteen-year old Simone, who lives with Duchenne muscular dystrophy; seven-year-old Margherita, who also appears on this year’s Rare Disease Day poster and who has Noonan syndrome; and Christopher, who has the genetic illness xeroderma pigmentosum, characterised by extreme sun sensitivity, which influenced the director’s choice to film the live action shots in semi-darkness.

The Rare Disease Day 2013 video is now available and you are invited to share the video by posting it on your association website or through social media channels such as Facebook. There is also a 30-second version available, created especially for news spots.

Help get the word out this Rare Disease Day. Reaching across borders, we can find common solutions. Let’s go beyond borders for rare disorders. Show your solidarity today!


Author: Louise Taylor, Communications and Development Writer, EURORDIS

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