Our Aims

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