What Can Unique Do To Help?
Having a child with a rare chromosome disorder can be a huge shock and can stir up a whole range of emotions and a great desire to learn more about your child's disorder. Most of us who help run the group have been through these experiences and know how you are feeling. Most parents' first reaction, quite understandably, is to "find" another, older child with the same disorder as their child. While this might be possible for some, it still does not mean that the two children will develop in the same way. However, just talking to other parents with a child with a rare chromosome disorder can be a great relief and can help to alleviate feelings of isolation and "why me?"
As part of its services, Unique runs telephone (+44 (0) 1883 723356) and email (firstname.lastname@example.org) helplines for new and existing member families and professionals to find out more information about the group and about specific rare chromosome disorders. We have developed and maintain a comprehensive offline computerised database detailing the lifetime effects of specific rare chromosome disorders among our members. By Spring 2013 over 10,000 families will have joined our membership, representing more than 14,000 individuals with a rare chromosome disorder registered on our database, the vast majority being new cases never reported in published medical journals. New families are joining us daily. If you go to our registered disorders page on this website you will be able to see all the different chromosomal disorders, with their genotypes where known, occurring among our members. The offline database can be used to link families on the basis of specific rare chromosome disorder. Often of more practical benefit, however, is to link families on the basis of problems as they arise, whether these are medical, developmental, behavioural, social, educational and so on. We also maintain close links with other similar groups around the world, thus increasing the "pool" of possible family contacts. Information about a specific rare chromosome disorder can be prepared from the Unique database while not revealing the identity of the families concerned.
We have developed a network of local groups, both face to face and virtual, and local contacts throughout the UK and across many parts of the world. We have a wide choice of social networking facilities, from public, private and Local to You Facebook groups to Twitter and YouTube, as well as a regular e-news alert for anyone to sign up to. Families affected by any rare chromosome disorder can often come together locally for general support and friendship, to pass on information about services available in their neighbourhood and to organise events to raise awareness of and funds to support the work of Unique. We publish a regular magazine in which families can write about their experiences and exchange useful information. We try to pack the magazine with lots of information and news helpful to our families. We also produce family-friendly information guides and articles about rare chromosome disorders and a whole host of other relevant topics. To view these guides and articles, please go to our Information Section.
As funds allow, we hold regular conferences and study days in the UK where families and professionals can meet and discuss latest developments. Unique can also act as a go-between to enable families to participate in any research projects relevant to their child's condition. Whatever your specific needs, Unique will try to provide you with tailor-made information and help relevant to your child's disorder. Please make use of these services - Unique is YOUR group.