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So You're Young & Affected By Huntington's Disease?

Life can already be crazy when you're a young person and being part of a HD family can really add to that stress! We understand that young people need all the support they can get and both we at Huntington's WA and a number of other organizations are out there to help!

Support from Huntington's WA

Huntington’s WA Youth and Young Adults is a group dedicated to young people from all over WA that come together during school holidays or weekends several times a year and connect online. We have several youth groups catering to different ages that have regular meet-ups and outings to get to know other young people in similar situations. We offer fun, respite, peer and staff support, mentoring and community. Young people have a strong voice in deciding what activities and education sessions they would like to be part of and the group evolves with the changing needs of our Young People. If you or someone you know would like to learn more or be part of our Youth, and Young Adult groups please get in touch. Previous events include camps, movie outings and horse riding, some of these are pictured in our gallery below. 

For more information or if you would like to participate in our groups or activities, please contact us

Huntington's Disease Youth Organisation

The Huntington's Disease Youth Organization (HDYO) is an organisation that serves specifically to benefit young people who are affected by Huntington's Disease. They provide a specially developed website for young people whose lives are affected by HD, containing information for children and young adults and accurate information about HD in an easy to understand format. To find out more please go to The site contains educational information created specifically for young people, by young people. The material includes articles, illustrations, videos, audio and personal stories. The goal of HDYO is to empower youth with knowledge about HD and provide a supportive community to help each other cope with realities of the disease. 

Here are some helpful youth-friendly links to get you started!


Other Helpful Organisations in WA

Young Carers WA

Young carers are people under the age of 26 who help look after a family member who needs extra support at home. The Young carer may not be the main person who looks after their relative, but they usually have extra responsibilities at home compared to other people their age. Young Carers

WA seeks to support people like you! For more information and contact details please see their website

 Online Support

The internet is a great place to get good, up-to-date information. Unfortunately, though, for every good website there is probably another one that has wrong or unhelpful advice or information. It's important, then, that you learn how to work out how to distinguish between the two.

Here's a few good sites that might point you to the information you need

  • Huntington's Disease Youth Organisation
  • The HDLighthouse mission is to present and explain the latest research findings so that HD families can become proactive in their care, have hope for the future, and make good decisions in the present
  • Scottish Huntington's Association has a financial wellbeing digital resource which helps explain complex financial topics in understandable terms -  Whilst some of the examples may be specific to Scotland, the principals are the same the world over. Please get in touch via if you would like assistance to explore the options available in Western Australia. 
  • Livewire provides free, safe and fun online communities for families affected by a serious illness, chronic health condition or disability.
  • Youth Focus is an independent organisation seeking to stop youth suicide. Youth Focus has eight offices and 40 school locations in Western Australia and provides free counselling services for those 12-25.
  • Beyond Blue is a national, independent, not-for-profit organisation working to address issues associated with depression, anxiety and related substance misuse disorders in Australia. There is also a youth specific site for those 12 to 25 years old - YouthBeyondBlue
  • Headspace is Australia's national youth mental health foundation. The Headspace mission is to deliver improvements in the mental health, social wellbeing and economic participation of young Australians aged 12-25. There are Headspace centres in Fremantle, Osborne Park, as well as in Albany and Broome.
  • Siblings Australia aims to improve the support available to the sublings of children and adults with chronic conditions. They provide support and resources for these individuals.
  • Generation Next contains information and content about mental health and growing up as a young person. 

Follow us on Social Media!

You can keep up to date with youth outings, research, and more by following us on our social media profiles! 

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