 |
| In the absence of a picture of a rare disease, here is a picture of a rare fruit. (A Dragon Fruit) |
I recently found out about Rare Disease Day which is next Thursday (28th February). This was because I came across Rare Disease UK ("The National Alliance for people with rare diseases & all who support them"). Apparently, in Europe the definition of a rare disease is one that affects less than 1 in 2000 people, and in the USA it is one which affects less than 200,000 Americans at any one time. So CLIPPERS is officially rare by either of these definitions, and on current numbers I suspect at the rarer end of the spectrum.
The point of Rare Disease Day and of Rare Disease UK (and similar organisations in other countries) is to raise awareness and particularly make the point that, although individual diseases and conditions may be rare, collectively it is not unusual to have experience of a rare disease. Indeed the statistic they quote is that 1 in 17 people will develop a rare disease at some point in their life. Rare Disease UK's longer term mission is to "campaign for the development and implementation of an effective strategy for rare diseases in the UK" which can be no bad thing.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
