Our mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.
Unique: Rare Chromosome Disorder Support Group
Who to contact
- Contact Name
- Unique
- Telephone
- 01883 330766
- info@rarechromo.org
- Website
- Unique Website
- Social Media
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