Unique - Rare Chromosome Disorder Support Group

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

Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.