Help raise awareness and increase understanding of Huntington’s by sharing information about HD on social media or sharing your experiences of the disease.

Share your story

During awareness week we will be working with local and national media to encourage a better understanding of Huntington’s and to demonstrate the impact of the disease on people’s lives. Help us reach more people by sharing your own story on social media.

What to do

  • Write about your experiences, take a photo or record a video and upload it to social media with the hashtag #HDawarenessweek
  • You could write or speak about your life with Huntington’s disease, learning about HD in your family, tips for managing symptoms, your experiences of the support and care you have received, or another aspect of living with Huntington’s.
  • If you would like to submit your story to be put forward to the press or to be considered for other communications within the HDA community, please email us at

Share information about Huntington’s

If you don’t feel able to share your personal experiences, but would still like to help raise awareness, why not share or post the following facts that we will be publishing throughout the week?

  • Huntington’s disease is an inherited degenerative condition which affects around 7,120 people in England and Wales.
  • Around 28,480 people live with a high genetic risk of inheriting Huntington’s disease in England and Wales.
  • Each child who has a parent with Huntington’s has a 50% risk of inheriting the gene that causes the disease.
  • The Huntington’s Disease Association is the only dedicated charity in England and Wales providing support to people living with Huntington’s.
  • The Huntington’s Disease Association provides life-line services to families living with Huntington’s.
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