Leaflets, Support groups and further information
There is a lot of information about genetics available on the internet; some of these sources of information are more accurate and reliable than others. We would recommend you wait before investigating these further until we can provide you with some advice about your condition and direct you to reliable sites and sources of information. However there is a short list of reliable sites below.
You may find the following support groups helpful if you are looking for information aimed at patients and their families affected with genetic conditions:
Genetics Alliance UK is a national charity working to improve the lives of patients and families affected by all types of genetic conditions. Their aim is to ensure high quality services, providing information and support to all, while actively supporting research and innovation.
Contact a Family supports families of disabled children across the UK, whatever their condition or disability. They provide information, advice and support, bringing families together so they can support each other. Parents can call a freephone helpline and talk to a parent adviser for information and advice on any aspect of caring for a disabled child.
Unique is a support group for anyone affected by a rare chromosome disorder. They provide support for children and families affected including practical support, access to support networks, information and links to relevant research. Unique runs a telephone and email helpline for families and professionals to find out more about the group.
Macmillan provides support, information and advice on all aspects of cancer care, from diagnosis, treatment, caring for someone affected and life after cancer. Macmillan can offer support locally, over the phone and via an online community.
ARC offers non-directive individualised information and support to parents who are making decisions around antenatal testing. They help parents cope with the uncertainty and anxiety which is an inevitable part of the testing process.
More Information about Genetics
The National Genetic Education Centre is funded by the Department of Health and aims to support the on-going education of health professionals in genetics. The resources found on this site are intended for healthcare professionals but may also be useful if you wish to find out more about genetics.
More information about genetics, inheritance and genetic services, including testing and counselling can be found on NHS Choices.