PO Box 2189
Tel: 01883 330766
Unique provides information, support and networking to families of children with any rare chromosome disorders and the professionals who work with them. Disorders include deletions, micro-deletions, trisomy, balanced translocations, unbalanced translocations, rings, inversions, duplications, micro-duplications, tetrasomy, monosomy, triploidy, isodicentric, marker, mosaic, sex chromosome aneuploidy (eg, 47,XXX 47,XYY 48,XXXX 49,XXXXY) etc. Membership of Unique is free. The aims of Unique are as follows:
- To link families whose children have similar clinical and/or practical problems.
- To act as an international family support group.
- To produce a newsletter three times each year.
- To promote awareness of rare chromosome disorders.
- To set up local groups throughout the UK for families affected by any rare chromosome disorder and to give support and encouragement to each other.
- To raise funds to support the group activities and produce literature to make others more aware of the children's conditions.
- To ensure that hospitals, doctors, health authorities, genetic clinics and other professionals are aware of the group so that they may have early contact with families where required.
- To ensure that the public at large are aware of rare chromosome disorders.
- To assist relevant research projects and the centralisation of information, at all times observing the need for total confidentiality.
- To develop and maintain a comprehensive computerised database detailing the life-time effects of specific chromosome disorders on affected members.
- To arrange for families to assist in research into rare chromosome disorders.
- To hold a regular conference and study days where families and relevant specialists can meet and be informed of the latest medical, technical and practical developments.
- To liaise and work in co-operation, with other similar support groups and professionals worldwide for the benefit of families and individuals affected by rare chromosome disorders.
- To produce the Little Yellow Book - a guide to rare chromosome disorders.
- To provide information about specific rare chromosome disorders to affected families and professionals.
- To produce a series of medically verified accessible leaflets about specific rare chromosome disorders.
Last updated on 24/10/2013