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Further information

Unique: Rare Chromosome Disorder Support Group

Our mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.

Who to contact

Contact Name
Unique
Telephone
01883 330766
E-mail
info@rarechromo.org
Website
Unique Website
Social Media
Facebook
Twitter

Other Details

Availability

Any Other Notes

Our Aims

  • To act as an international group, supporting, informing and networking with anyone affected by a rare chromosome disorders and with any interested professionals
  • To publish a magazine three times each year
  • To promote awareness of rare chromosome disorders
  • To link families whose children have similar chromosome disorders, clinical and/or practical problems
  • To support and promote relevant research projects
  • To help families participate in relevant research projects
  • To centralise information, at all times observing the need for total confidentiality
  • To set up local groups, both physical and virtual, throughout the world for families affected by any rare chromosome disorders so that they can give support and encouragement to each other
  • To hold regional social gatherings for families in the UK
  • To develop and maintain a comprehensive computerised database detailing the life-time effects of specific chromosome disorders on affected member
  • To develop a series of family-friendly information guides on specific rare chromosome disorders as well as practical guides on aspects of daily living
  • To provide anonymised information about the effects of specific rare chromosome disorders to help clinicians counsel their patients
  • To hold regular conferences 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 relevant support groups and professionals world-wide for the benefit of families and individuals affected by rare chromosome disorders
  • To ensure 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
  • To give presentations about rare chromosome disorders and the work of Unique to parents' groups, professionals and the general public
  • To represent the voice and perspectives of families affected by rare chromosome disorders by participating in professional working groups, advisory boards, committees and conferences worldwide
  • To raise funds to support the group’s activities and produce literature to make others more aware of our children's conditions

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