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Huntington's Disease Youth Organization

How many people does HD affect in the world?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. How many people does it affect in the world? Like 1 out of every how many people does it affect?

Renee, Teen, USA

Ask a question

A. Hi Renee,

Thank you for reaching out to HDYO with you question. My name is chandler and I work with young people and families across the US to answer questions and provide support.

In regards to your question there are a few rates you’ll hear in regards to HD. Some people say there is one person with HD in every 7-8,000, but others say that it is 1 in 10,000.

In the US, there is an estimated 30-50,000 people who are symptomatic or carry the HD gene (this means they have had a blood test confirming that they will get HD one day, but aren’t experiencing any symptoms at the moment). This leaves 200-250,000 people at risk in the US since HD is genetic and one of an individual’s parents must carry the mutated gene for it to be passed on.

I hope that answers your question. Please don’t hesitate to reach out if you have further questions.

Take care

Chandler