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Huntington's disease charities form new alliance
June 2009
The four Huntington's disease charities throughout the UK and Ireland have come together to form a unique Alliance for Huntington's Disease Awareness Week, 8th - 15th June 2009. The aim of the collaboration is to make as many people as possible aware of this rare disease and its devastating effect on whole families.
The new partnership will be called 'The UK and Ireland Huntington's Alliance'.
It is not going to be another 'super charity' but will be a collaboration of shared skills and knowledge, with resources being applied to specific projects that will directly benefit the affected families.
Tony Hadley, lead singer of the 1980's pop band, Spandau Ballet, together with Shane Richie, actor, singer, comedian and media personality are both new Patrons of the Huntington's Disease Association of England and Wales (HDA) and will be working closely with the HDA to raise awareness of the disease. Their first appearance as Patrons of the Association will take place at an exclusive press conference at lunchtime on Tuesday 9th June at the Kings Fund in London.
Sarah Winckless, World Gold and Olympic Bronze medallist will also be attending the press conference to talk about HD and her experience of receiving a positive genetic test for the disease. Sarah is also the Patron of the Scottish Huntington's Association.
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The four Huntington's Disease Associations across the UK and Ireland provide specialist advice, information, support, education and training to families affected by the disease and the health professionals who support them.
The HDA of England and Wales are very excited to be working with the Scottish Huntington's Association, the Huntington's Disease Association of Northern Ireland and the Huntington's Disease Association of Ireland.
We look forward to a future of sharing our skills, knowledge and expertise to raise the profile of HD and improve the services to families affected by the illness.
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