There are now just 9 days left until Rare Disease Day this year. It is very exciting that families, organizations, businesses and governments in 46 countries will be holding events to mark this day and set strategies for the year ahead. Rare Disease Day was only newly established in 2008 by EURORDIS, which continues to oversee the organisation of the day.
‘Rare but Equal’ is the slogan representing this year’s theme: ‘Rare Diseases and Health Inequalities’. A forthright discussion of the frustrations of rare disease diagnosis, care and research promises to sharpen the focus of policy-makers, healthcare administrators and others by pinpointing specific areas of lack for those affected by rare diseases. It will also increase the urgency for more deliberate and well-considered/judicious healthcare provision. An examination of healthcare inequalities will have important implications for general public health policy as well, by drawing attention to inter-country health differences exacerbated by the experiences of rare disease patients.
It seems that this year will be an exceptionally interesting Day as rare diseases have recently begun to garner much attention, from pharmaceutical companies shifting to invest in personalized medicine and targeted treatments to national health reforms examining current rare disease policy. As examples of this increasing interest, the events of the day in the United Kingdom will include parliamentary receptions to unveil recommendations for national rare disease strategy. In the United States, Dr Francis Collins, Director of the National Institutes of Health (NIH), will be speaking on translational research.
If you would like to get involved in marking Rare Disease Day, visit the global Rare Disease Day site to learn about events worldwide. Of particular note is a video project organised by Rare Disease Day USA together with the National Organization of Rare Disorders (NORD). Make a video of your experience with a rare disease and post on Youtube. Every video posted will raise $10 for NORD. If you would like to participate, learn more here.
Be sure to take part in Rare Disease Day 2011!
www.bhdsyndrome.org – the primary online resource for anyone interested in BHD Syndrome.