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HDYO Definitions

June 17, 2013

Huntington's Disease Youth Organization

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


HDYO Definitions

Who HDYO supports and how

HDYO provides support to young people impacted by HD around the world. That is our goal and mission, but what does it mean… who is included… and what do we offer?

What is the definition of a ‘young person’ to HDYO?

The definition of who is considered a ‘young person’ varies worldwide so this segment is here to explain who is seen as a young person by HDYO.

On the HDYO website we highlight three different categories of youth: kids, teens and young adults. These are the three categories of young people that we focus our supportive content and opportunities on. We don’t put a specific age on who is viewed as a kid, teen or young adult. However kids and teens, we feel by most societies, are specifically aged between 0-12 and 13-19 respectively. Defining ‘young adults’ is less clear but we focus our young adult support on those aged between 20-35. This does not mean people over 35 are excluded from HDYO support. But it does mean that our support services are focused on those age ranges, therefore someone over the age of 35 may not find that HDYO provides beneficial supportive opportunities for their age group. However, our supportive content online is open to all ages to benefit from.

HDYO also provides supportive content and opportunities for parents, carers or guardians of young people impacted by HD. This support is always specifically aimed to help parents, carers or guardians improve the support they provide for young people.

What defines a young person as being ‘impacted’ by HD?

HD can impact on young people in a variety of ways. We feel that you would fall into the category of a young person impacted by HD if you are:

  • At risk for HD
  • In a family with HD (whether yourself at risk or not)
  • Know someone with HD
  • In a relationship with someone impacted themselves by HD in some manner
  • A young person who has tested positive or negative for HD
  • Diagnosed with HD or Juvenile HD
  • Learning about HD for educational purposes – e.g. a school project
  • Feeling concerned about HD for any reason

What is the definition of ‘support’ to HDYO?

HDYO provides support to young people impacted by HD. This support can come in many forms such as:

  • The HDYO website, www.HDYO.org, which offers a huge library of educational sections created specifically for young people about many different topics
  • HDYO educational conferences/events to help educate young people and families
  • Confidential online support – an opportunity to talk about HD privately with HDYO
  • Participation projects for young people globally to get involved with
  • Support opportunities such as camps or retreats for young people
  • Help young people to make contact with services in their region
  • Provide local contacts for HD specific support groups or clinics
  • Collaborate with Huntington’s Disease Associations and other organizations/groups around the world to increase youth support
  • Outreach to young people impacted by HD globally
  • Provide a place for young people to connect with others going through similar stages of life in regards to HD
  • Ability for young people to ask questions to professionals in HD
  • Provide support and advice for anyone fundraising for HD

HDYO is always looking to develop and improve its support opportunities for young people impacted by HD around the world. We hope this page has helped in making it clear what HDYO can do for you. If you have any questions, please contact us.