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URL: http://www.rarechromo.org/html/home.asp

Proper Citation: Unique (RRID:SCR_006492)

Description: Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide. Unique''''s Karyotype Database allows users to search the Registered Chromosome Disorders by chromosome, arm and disorder. You may have been given a diagnosis or indication of a chromosome disorder by a geneticist or other medical professional and they may have used a medical term which is unfamiliar to you. So to help you decide if Unique is the appropriate organization for you, we thought it would be useful to describe the different categories of rare chromosome disorder. Rare chromosome disorders can be grouped as structural disorders, numerical disorders and other miscellaneous disorders. Unique: * acts as an international family support group * produces a newsletter three times each year * works to promote awareness of rare chromosome disorders * arranges for families to assist in research into rare chromosome disorders * links families whose children have similar clinical and/or practical problems * works to ensure that the public at large are aware of rare chromosome disorders * works to raise funds to support the group activities and produce literature to make others more aware of our children''''s conditions * assists relevant research projects and the centralisation of information, at all times observing the need for total confidentiality * sets up local groups throughout the UK for families affected by any rare chromosome disorders and to give support and encouragement to each other * develops and maintains a comprehensive computerised database detailing the life-time effects of specific chromosome disorders on affected members * aims to hold an annual conference where families and relevant specialists can meet and be informed of the latest medical, technical and practical developments * liaises and works in co-operation, with other similar support groups and professionals world-wide for the benefit of families and individuals affected by rare chromosome disorders * ensures that hospitals, doctors, health authorities, genetic clinics and other professionals are aware of the group so that we may have early contact with families where required Membership of Unique is free but the group receives no government funding and is heavily reliant on donations and fundraising to continue its work. Please help us in whatever way you can.

Abbreviations: Unique

Synonyms: Unique - The Rare Chromosome Disorder Support Group

Resource Type: patient-support portal, people resource, portal, data or information resource, patient registry, disease-related portal, topical portal

Keywords: chromosome, disorder, gene, karyotype, fish, arraycgh, genotype, phenotype, education, behavior, child development, communication, child, adolescent, rare disease, deletion, duplication, FASEB list