If your child has been diagnosed with a rare syndrome or condition, there are a number of organisations that can give you information and support.

Having a child with a rare disorder can be a huge shock and can stir up many emotions as well as a desire to learn more about your child's condition. There are organisations who can put you in touch with families who have a child with the same condition, or with families of children with other rare conditions who may be having similar experiences to you.

Unique

About us

Unique gives information and support to families and individuals affected by any rare chromosome disorder, and to the professionals who work with them. Although Unique is based in the United Kingdon (UK),  it welcomes members worldwide and has contact with almost 200 families of children with rare chromosome disorders in Ireland .

Those who help run the Unique group have been through these experiences and so they have first hand knowledge of how you might be feeling. Most parents' first reaction, understandably, is to find if another, older child has 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 chromosomal disorder can be a great relief and can help to ease feelings of isolation and "why me?"
 

Our Services

Unique offers a range of information and support services including its:

• helpline - you can contact the Unique helpline by telephone (+44 (0) 1883 330766) or email (info@rarechromo.org); the helplines are for new and existing member families and professionals to find out more information about the group and about specific rare chromosomal disorders;
• database - Unique has set up a comprehensive offline computerised database, which gives details of the lifetime effects of specific rare chromosomal disorders among its members;
• information booklet - Unique has put together a booklet called 'The Little Yellow Book'  to give you a basic understanding of chromosomes and rare chromosome disorders and to tell you a little bit about the group. New families will automatically get a printed copy of this booklet when they join Unique. The booklet is available in English, Spanish, Italian, Norwegian and Finnish. The Little Yellow Book is quite large and may take a few minutes to download.

Contact Details

You can contact Unique by post, phone, email or by visiting its website:

Unique,
PO Box 2189,
Caterham,
Surrey,
CR3 5GN,
United Kingdom.

Telephone:+44 (0)1883 330766
Email: info@rarechromo.org
Website: www.rarechromo.org