International Rare Disease Day: It just keeps on getting better!
Participants around the world lift hands in an unprecedented show of solidarity
The fifth International Rare Disease Day saw a record number of activities from a ground-breaking number of countries moving forward awareness, resources and structures for rare disease patients around the world. First-time countries this year included Costa Rica, Chile, Macedonia, Malta, Pakistan, Uruguay, and Venezuela, bringing the total number of countries hosting activities to 64. This year over 300 "Friends of Rare Disease Day" signed up on the Rare Disease Day (RDD) website including the French Ministry of Health and other luminaries such as Harvard Medical School, the Slovenian Ministry of Health, members of the biopharmaceutical industry, numerous patient groups and individuals involved with patients, rare disease research entities, and others. Participants around the world were asked to raise their hands this year in a collective demonstration of solidarity Learn more.
The response to social media was strong: the RDD Facebook page received over 13 000 "likes" and thousands of "Tweets" were sent via Twitter. The official RDD website was visited more than 40 000 times in the weeks leading up to 29 February - more than double the number from the same period a year ago. Over 350 photo stories were uploaded to the site and the special Rare Disease Day video has been viewed over 100 000 times. The media played a key role as print, radio and television news sources around the world reported on the happenings, heightening exposure to the rare disease cause significantly.
Notable this year was the widespread participation from all the major strands of the rare disease community: not only the patients and patient groups; but also members of the biopharmaceutical industry; research organisations and academia; healthcare professionals; and government representatives. Such confederacy embodied the spirit of this year's theme: Solidarity and brought true meaning to the 2012 slogan: Rare but Strong Together.
Held on the last day in February each year, highlights of the 2012 event in Europe include a symposium in Brussels (learn more), the publishing of a consultation for a United Kingdom plan for rare diseases (learn more), the official launch of the French Foundation for Rare Diseases (learn more), and the creation of the Northern Ireland Rare Disease Partnership (learn more). Across the Atlantic, public and private entities in North America were out in force and a major highlight was the launch of the Genetic Testing Registry by the National Institutes of Health in the USA (learn more).
The European Union Committee of Experts on Rare Diseases and OrphaNews Europe express their appreciation for every single participant around the world who brought much needed visibility to the rare disease cause.
29 February, 2012 was the occasion for the Department of Health, on behalf of all four health administrations in the United Kingdom, to launch a consultation for a Rare Disease Plan. Following the European Council Recommendation that each European Union Member State develop a national strategy for its rare disease patients, the plan is open for UK-wide consultation until 25 May 2012. Responses to the consultation will inform the final plan, due to be produced by the end of 2013. In a nutshell, the proposed plan recommends using specialist centres to make exact diagnosis; acknowledges that all doctors should have the right training to be aware of the possibility of a rare disease; and recommends that the care of patients with rare diseases be better coordinated. In a press release, Alastair Kent OBE, the Chair of the group 
The National Institutes of Health (NIH) took the occasion of International Rare Disease Day to launch the Genetic Testing Registry (
