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Genetic Disorders

UK sources of information and / or support

Patient UK (this website) has an extensive directory of self help and support groups, with many groups listed in the genetic section. Other useful sites include.....

Patient apple icon (PatientApple.gif) Contact a Family

A major UK charity providing support and advice to parents whatever the medical condition of their child. Their directory of diseases also provides information on a large number of conditions, many of which are rare.

Patient apple icon (PatientApple.gif) Rare disorders

A section of the 'Contact a Family' website giving lots of information on rare conditions. the website

Patient apple icon (PatientApple.gif) National electronic Library - Clinical Genetics Specialist Library

Aimed at health care professionals, but may be of interest to the general public.

Patient apple icon (PatientApple.gif) Genetic Interest Group (GIG)

A national alliance of organisations with a membership of over 120 charities which support children, families and individuals affected by genetic disorders / genetic diseases. Its primary goal is to promote awareness and understanding of genetic disorders so that high quality services for people affected by genetic conditions are developed and made available to all who need them.

Patient apple icon (PatientApple.gif) genISYS website

This website provides information about the South East of Scotland Genetic Service including the variety of genetic disorders they assess and the services they offer. There are also links to other relevant Internet resources

Patient apple icon (PatientApple.gif) Human genetics commission

This is the UK Government's advisory body on new developments in human genetics and how they impact on individual lives. They give the Government advice on human genetics with a particular focus on the social, ethical and legal issues

Patient apple icon (PatientApple.gif) Unique - Rare Chromosome Disorder Support Group

Unique is a source of information, mutual support and self-help to families of children with any rare chromosome disorders including deletions, trisomy, balanced translocations, unbalanced translocations, rings, inversions, duplications, tetrasomy, monosomy, triploidy, isodicentric, marker, mosaic, sex chromosome aneuploidy (e.g. 47,XXX 47,XYY 48,XXXX 49,XXXXY etc.) etc.

Patient apple icon (PatientApple.gif) BBC - Genes and Health

A site which aims to demystify some of the issues involved and give you a better understanding of the world of genes. Includes an A-Z of genetic disorders.

Patient apple icon (PatientApple.gif) BDF Newlife

Support and information for parents of children with birth defects, which are sometimes caused by genetic problems.

Patient apple icon (PatientApple.gif) Living with Genetic & Metabolic Disorders

A support group for people suffering from all types of Genetic & Metabolic disorders not only for sufferer's but carer's & people that have lost loved ones from these illneses.

Patient apple icon (PatientApple.gif) UK Genetic Testing Network

Aims to provide equal access to high quality molecular genetic testing services for patients from across the whole of the UK. It is a network of laboratories that offer tests for inherited single gene germ line disorders.

Patient apple icon (PatientApple.gif) Cochrane Cystic Fibrosis & Genetic Disorders Review Group

Comprisesan international network of health care professionals, researchers andconsumers preparing, maintaining, and disseminating systematic reviewsof randomised control trials in the treatment of cystic fibrosis andother genetic disorders.


Further sources / more detailed information

Some non-UK sites

The following list popular non-UK health information sites with content aimed at the general public. They are mainly from the US. They have not been checked to see if information about the above topic is included but these large sites are comprehensive.

More detailed medical information

The following list online sources of more detailed medical information, mainly from the UK. These sites are mainly aimed at health professionals, but are of interest to all. They have not been checked to see if information about the above topic is included, but information about most medical topics can usually be found.



















Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.

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Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.

Advertise on this site


PS - Health and Poverty

Perhaps the biggest cause of ill health in the world is poverty. Help to Make Poverty History. For example, why not lend some of your money to disadvantaged communities to enable them to trade their way out of poverty through schemes such as Shared Interest.

See also MAKEPOVERTYHISTORY North East for details and links to campaigns against poverty.

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