USHER SYNDROME AWARENESS DAY UK

USHER SYNDROME AWARENESS DAY UK

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Jo Milne (White) started this petition to UK Government

HELP FURTHER OUR CAUSE TO RECOGNISE THE NEED FOR AN USHER SYNDROME AWARENESS DAY IN THE UK.

“To eliminate the fight every day, to be simply seen, understood and recognised".

Usher syndrome is the leading cause of genetic deafblindness, and affects over 400,000 of us worldwide, and approximately 9,000 reside in the UK. We are always striving to be fully functional members of society, in spite of the sight, mobility and hearing challenges set against us day to day.  We are driven to raise awareness of Usher Syndrome, not just in the clinical environment but in every part of our diverse society.  In order to achieve this, we are asking the great British public to help us bring these issues to the fore and make it known to the widest possible audience, that we will not be ignored. 

We believe that education plays a pivotal role, and part of this is to raise awareness via our UK Government.  We wish to create a progressive dialogue and dedicate an Awareness Day to the Usher Syndrome community, to their friends and families and our health professionals to help further understand the condition we live with.

This would be a day of 'celebration and education' and ultimately, with all your help, such participation may help to find a cure.

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