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. All 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. Whilst 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 chromosomal 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 330766) and email (info@rarechromo.org) helplines for new and existing member families and professionals to find out more information about the group and about specific rare chromosomal disorders. We have developed and maintain a comprehensive offline computerised database detailing the lifetime effects of specific rare chromosomal disorders among our members. At the beginning of 2006 more than 5300 individuals with a rare chromosome disorder were registered on the offline database, the vast majority being new cases never reported in published medical journals. New cases are being added 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 karyotypes where known, occurring among our members. The offline database can be used to link families on the basis of specific rare chromosomal 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 maintains close links with other similar groups around the world, thus increasing the "pool" of possible family contacts. Information about a specific rare chromosomal disorder can be prepared from the Unique database whilst not revealing the identity of the families concerned.

Many local groups and contacts have been formed throughout the UK (and even in a few other countries). Families affected by any rare chromosomal disorder can come together locally for general support and friendship and to pass on information about services available in their neighbourhood. We publish a regular newsletter in which families can write about their experiences and exchange useful information. We try to pack the newsletter with lots of information and news helpful to our families. We also produce family-friendly information leaflets and articles about rare chromosome disorders and a whole host of other relevant topics. To view these leaflets and articles, please go to our Information Section.

We aim to hold a regular conference 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.

Unique’s Beating the Isolation Project: Surrey & Sussex Pilot

2009 sees the roll out of Unique’s Beating the Isolation Project, a strand of our work designed to reach out to the disadvantaged in society who are also living with a family member who has a rare chromosome disorder. We received £8,500 from the Gatwick Airport Pantomime Society in 2008 which will go towards piloting this work in Surrey and Sussex, UK (see the foot of this page for details of an upcoming event).

A brief outline of the work:

‘Beating the Isolation’ is a high-profile, community-based project targeting those isolated by having a rare chromosome disorder in their family, many of them doubly disadvantaged by additional issues such as culture, poverty and a language barrier.’

• Families who are most in need will be informed, empowered, included and supported through what for many will be the most difficult period in their lives as they come to terms with their child’s disorder.
• Unique will establish a local presence, involving professionals at every level and seeking out disadvantaged and isolated families, making sure they find Unique and can take advantage of our services.
• We will give presentations to professionals from schools, community centres, GPs’ surgeries and hospitals around our Regional Genetics Centres. Our aim is that every family diagnosed will be informed about Unique.
• We will invite local member families to a social event so that they can meet others living with rare chromosome disorders to socialise in a relaxed and informal setting.
• Through this work we will reach out to isolated families in BME communities, work already begun by our Information Officer and Family Support Officer.
• Using Unique’s network of local volunteer contacts we will ensure we retain a real and active presence on the ground in local communities, supporting families and maintaining awareness of Unique among professionals.