28 February 2013 marked the sixth Rare Disease Day. And what a day it was!Março 2013
Rare Disease Day has steadily grown in momentum since it was launched in 2008 by EURORDIS and its Council of National Alliances.
For Rare Disease Day 2013, thousands of activities took place in a record-breaking 71 countries and regions. All around the world, rare disease stakeholders – including patients and patient alliances, health-care professionals, researchers, members of learned societies, policy makers, biopharmaceutical companies, media, and friends, turned out to help raise public and political awareness for the issues the rare disease community faces on a daily basis – a lack of knowledge and information, scarce and scattered resources, and a lack of medicines, treatments and services. New to the scene in 2013 were Bahrain, Iceland, Israel, Lebanon, the former Yugoslav Republic of Macedonia, Palestine, Saudi Arabia and Singapore. We made some wonderful new friends!
In Brussels, EURORDIS co-hosted with Members of the European Parliament a Policy Discussion Meeting entitled “Faster Access to Medicines for Rare Disease Patients”, designed to move forward the process of improving access to treatment in the context of the revision of the EU Transparency Directive. The event was attended by 100 participants, and watched simultaneously by over 200 viewers from 10 countries through livestreaming. If you missed the stimulating discussion that took place in Brussels, you can still watch it via EURORDIS TV.
Rare Disease Day was also the occasion to acknowledge the outstanding contributions of members of the rare disease community with the 2013 EURORDIS Awards. Learn more about this year’s recipients.
The Internet and social media again proved successful in spreading the Rare Disease Day message and allowing the rare disease community to interact and share. The Rare Disease Day website received over 20,000 visits on 28 February alone. In the months leading up to Rare Disease Day, visits topped 75,000. Hundreds of beautiful photos and videos were uploaded to the website’s Tell Your Story section, including scores of images demonstrating the Rare Disease Day call to raise and join hands.
The official Rare Disease Day 2013 video, created to raise awareness for this year’s theme of solidarity, and particularly international cooperation and collaboration, was translated into 15 languages and viewed over 60,000 times. The video was “liked” over 140,000 times on Facebook. Rare Disease Day also garnered plenty of “tweets” via Twitter. With some 28,000 tweets on 28 February (working out to about 17 tweets per minute), news was buzzing.
From a Rare Disease Day Barbecue in Australia, to a scientific symposium in Bahrain, or a daylong event in Singapore based around the theme Love is not Rare – there was something for everyone this Rare Disease Day. The array of events on offer around the world was as diverse and original as the participants themselves: painting classes, press conferences, policy events, petitions, fun runs, medical conferences. Take a look at some of the highlights of this year’s campaign on the Rare Disease Day website.
Thank you to everyone who participated this year by attending an event, sending in a photo, sharing the Rare Disease Day video, or spreading the word in any other number of ways. With such strong worldwide participation, Rare Disease Day 2013 truly lived up to this year’s slogan: Rare Disorders without Borders.
Author: Louise Taylor, Communications and Development Writer, EURORDIS