Without wishing to open that old hornet’s nest about the value of Awareness Days/Weeks/Years [delete as necessary], it does seem as though February and March are the busiest months for such events doesn’t it? Tweets announcing the latest and the greatest pop up on my phone like the offspring of rampant sheep, such are their regularity.
Are there enough days left for awareness, I wonder? I am sure there is some bright PR guru out there, advising an ill-advised organisation to break the mould and hold a ‘non-awareness day’ – just to be different. Since most awareness days appear to be national in their intent, I am myself thinking of starting ‘micro-awareness days’ exclusively within my own home. These will draw household attention to key issues such as room cleaniness, tv-remote rage, and the case for re-homing odd socks.
In spite of this seemingly unkindly introduction, I tend towards the view that there is space for them all and that the best really can be quite brilliant.
Earlier this week it was rare disease day 2012. See here for more info about the Rare Disease UK national alliances which has had a not insignificant impact on policy in the short time since it has been around: cue link to the plan for rare diseases published this week by the Department for Health and open for consultation.
By coincidence, I am speaking tomorrow at the Birdshot Uveitis Society’s ‘Birdshot Day’ in London. Birdshot Uveitis is a rare disease which leads to sight impairment and, more often than not, blindness. Tomorrow, patients and professionals will be coming together to launch and celebrate the establishment of their new research network and biobank. An incredible achievement in the less than two years since Rea, one of their founders, came to see me at AMRC to discuss their vision and plans. And this, before they had even registered as a charity.
It will be a brilliant day.
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