On the 28th February it is Rare Disease Day. This is the seventh official RDD, which is co-ordinated by EURORDIS. In the past more than 70 countries worldwide have taken part in planning activities and raising awareness for chosen diseases. The day aims to grab the attention of the public and decision makers about rare diseases and the impact they have people. You don’t just have to have an illness to suffer, suffering spreads to family and friends too. A lot of people who write about having Hypermobility Syndrome and Ehlers-Danlos online often refer to feeling alone when it comes to their health problems. This isn’t the way it should be as these conditions are not rare, they are just rarely diagnosed.
The Rare Disease Day website has ideas and information about getting involved. The theme of this year is care, better care and caring more! The RDD team have a Facebook page and Twitter feed with information updates. Worth a look if you are a rare disease sufferer. I’ve found a lot of people take comfort in knowing they can have a support system, and relief when they find one that suits them.
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