Unique - Rare Chromosome Disorder Support Group

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PO Box 2189

Tel: 01883 330766

Web: www.rarechromo.org

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

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