Chromosome disorder charity celebrates 21 years (From Harrow Times)
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Chromosome disorder charity celebrates 21 years
3:46pm Thursday 3rd November 2005 in News By Tracey Treanor
A HARROW Weald woman celebrated 21 years as charity founder at Unique's bi-annual conference.
Edna Knight from Locket Road founded Unique in 1984 as the Trisomy 9 Support Group as two of her four daughters have a rare chromosome disorder. The aim was to provide links between families whose children have similar clinical and/or practical problems caused by these disorders.
At that time, the group had just five member families. In 1989 the group expanded to include families whose children have any rare chromosomal disorder and in 1993 the group became a registered charity and Unique has been a source of mutual support and self-help for these families since then.
Group membership stands at 4,700 families in 66 countries worldwide, with over 2,300 families in the UK.
Every year at least one in every thousand births in the UK is affected by a rare chromosome disorder.
Rare Chromosome disorders occur because of extra, missing or rearranged chromosomal material, but do not include the more common conditions like Down Syndrome.
The problems arising also vary greatly. Extra or missing chromosomal material will usually cause some degree of learning difficulties, physical disabilities, health and/or behaviour problems. Some chromosome disorders are so rare they are actually unique which is why the charity chose that name.
Edna said: "It was such a relieve to meet other families that are going through similar experiences to me as at first you feel like you are the odd one out and isolated.
"I cannot believe how large the charity has grown, it is good that families have this support group."
Over 70 families from the UK and Europe attended the conference to meet with other families who are affected by a rare chromosome disorders. The weekend is really important for new families to meet with others in similar situations and also learn more about genetic diagnosis techniques as well as taking part in workshops with practical advice on how to cope with issues such as sleep disorders and behaviour problems.
To join Unique contact 01883 330766 or to donate contact 0117 949 4748. For more information www.rarechromo.org.
