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Huntington's Disease Youth Organization

About HDYO

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

The HDYO group

What is the HDYO?

The Huntington’s Disease Youth Organization is an international non-profit organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.

How is HDYO run?

HDYO was founded and is run mostly by young people impacted by HD for other young people. Since launching in 2012, we have developed a team of over 170 volunteers in a variety of roles, who are almost all young people impacted by HD. Our roles include:

We also have two staff roles including the Project Coordinator and a Director of Youth Services.

What are HDYO’s goals?

HDYO aims to provide support to young people (kids, teens and young adults) impacted by Huntington’s disease around the world. We seek to drastically improve the amount of educational information provided to young people and their families with regards to Huntington’s disease. Also, HDYO looks to improve support for young people both locally and globally, by collaborating with national Huntington’s disease associations around the world to improve youth support in their area.

How was HDYO formed?


HDYO was officially launched on 7th February 2012, but the idea for HDYO began back in the summer of 2010. HDYO was first presented and discussed by its eventual founder, Matt Ellison, at the Young Adults Working Group for EHDN in 2010. The working group’s task is to produce ways to improve support for young adults impacted by the disease. The idea of HDYO received unanimous backing from those at the meeting and work began to make the idea a reality. From that meeting excitement spread and young people around the world began offering their services in order to help create HDYO. Many took the role of translators and began the massive task of translating material that was being created by HDYO. Others joined the HDYO Board to help assist in the planning of the HDYO project. It took over 18 months of hard work, collaboration, communication and determination to produce the end result of HDYO – an exciting, youthful organisation to support young people impacted by Huntington’s disease.

How is HDYO funded?

The money to initially launch HDYO was raised by young people working on the project, through various acts of fundraising. Now, HDYO is financially supported and backed by the Huntington’s Disease Associations around the world - who each donate an annual sum to the HDYO cause, which enables HDYO to create more support, educational information and opportunities for young people impacted by HD around the world. We also receive grant funding to cover our staff roles and enable us to bring support events to various regions of the world.