Rare Disease Day
Rare Disease Day falls on the last day of February, it is an annual awareness day, a ‘rare’ date in a month with a ‘rare’ number of days! Rare Diseases Ireland (RDI) is a non-governmental organisation which acts as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare diseases. Together with other interested stakeholders RDI organises activities to mark Rare Disease Day in Ireland. The campaign seeks to raise awareness with policy makers, public authorities, health professionals, researchers, industry representatives and the general public.
Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. The campaign started as a European event on February 29th, 2008 and has now gathered support throughout the world.
An Easy Guide to Rare Diseases in Ireland and Consensus for Action was launched with minister Simon Harris at the Mansion House on 24th February in advance of Rare Disease Day. Huntington's Disease is one of fifteen rare diseases profiled in the guide. Chloe who is featured, attended the launch with her mother Geraldine and her aunt Fiona. Chloe pictured on the left above (centre) sadly passed away in April. Chloe had bravely lived with Juvenile Huntington's disease for over ten years. HDAI are sincerely grateful to Chloe and her family for raising awareness of Juvenile Huntington's disease and advocating for HD families.
Other Rare Disease events included a Joint North South Conference which took place in Belfast on February 28th, and a Rare Disease Day Party at Áras an Uachtaráin, hosted by President and Sabina Higgins.