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Welcome to the Predictive Testing for HD Website

This website has been designed to provide information, support and resources for individuals who are considering undergoing predictive testing for HD, as well as their family members, friends and health care providers.

What is Huntington Disease?

Huntington disease is an inherited condition associated with movement disorder, personality changes and intellectual decline.

The name Huntington comes from George Huntington, the doctor who first described the disorder, in 1872. Chorea is the Greek word for dance, which reflects the involuntary movements associated with HD.

Thinking about predictive testing for HD

In 1993 the gene causing HD was identified. This means that individuals at risk for HD can now be directly tested to “predict” who will develop this disease.

The decision about whether or not to have testing for HD is a very complex and personal one. This section is intended to help the individual considering testing for HD to reflect on some of the issues involved in testing and in dealing with the test results.

Research and discovery in HD

Research into HD offers great hope for families and those affected by the disease. Recent findings from scientists and researchers mean that we are closer than ever to finding therapies and treatments for the disease.

A Family Affair

HD is an inherited condition which is passed down through families due to a change in the HD gene. We explain more about the inheritance of HD, DNA and genetics, and why sometimes there is no family history of the condition.

Our Stories

We understand that learning that someone in your family has HD can be devastating. It can leave you with questions, concerns, and no idea where to turn next. Find more about what others have done in your situation – you are not alone.

Testing for HD

The decision about whether or not to have testing for HD is a very complex and personal one. For some, the test provides information about their future. Others choose not to undergo testing. There are no right or wrong choices. We will help you to make an informed choice regarding testing, and support you through the whole process.