Unique is the only UK charity supporting and informing families affected by life-long rare chromosome disorders (RCDs). Though individually rare, at least 1 in 200 live born babies have a RCD, often causing physical and learning disabilities along with complex health issues. We currently have almost 3,000 member families in the UK, many caring for children who are very sick and severely disabled and having no source of information and support. Membership has increased five-fold in the last nine years. Using our database we are able to focus on the health needs of our community and link families with others living with similar disorders for mutual support. This network is what makes our community so strong.
These needs were originally identified by families with children who have been diagnosed with RCDs who had nowhere to turn for help or information. Their vision and dedication mean Unique has been able to grow, developing a world-leading relational database of RCDs, updated and used constantly to inform families and professionals alike. We have forged strong links with the genetics and medical communities with many specialists refering families to Unique immediately after diagnosis.
The severity of the health-related needs of our members varies greatly by specific disorder; many of our children will be totally dependent on their carers for the duration of their lives. Most require some level of medical intervention, many having life-limiting and even life-threatening health issues.
Unique also serves the medical community by providing information on thousands of different RCDs, continuing to build a knowledge base around poorly understood conditions. We inspire the geneticists, doctors, nurses, therapists, midwives and others who come into contact with children suffering from the consequences of RCDs. This synergy between specialists, medical research and families has helped to create a wealth of information not previously available.