About HDYOKTYPJPMarch 30, 2021The Huntington’s Disease Youth Organization is non-profit set up to provide support and education to young people (aged up to 35) impacted by Huntington’s disease (HD) around the world. View our definitions of ‘young people’ and ‘impacted by HD’ below. We are an official entity in both the USA (501c3) and United Kingdom (Charity Commission #1145781). Our goals/what we doOur goal is to provide support and education for young people impacted by HD globally. We do this through providing professional support online, creating needed educational content for all age groups (kids, teens, young...Find out more...

HDYO Staff TeamEveryoneMarch 03, 2021Here is our current staff team and a summary of what we do, please feel free to reach out to us directly. You can also contact the HDYO Board.Project CoordinatorMatt Ellison Hi! My role at HDYO includes developing all the educational project work we do for our website, including video projects, overseeing the youth camps and events HDYO hosts globally, planning future global projects to expand our reach, keeping the website up-to-date, responding to any messages we are sent for support/advice/questions and coordinating our volunteer translation team.I am the founder of HDYO and come from a...Find out more...

Translator TeamKTYPJPOctober 14, 2015HDYO’s mission is to support young people affected by Huntington’s disease all over the world. In order to provide support, HDYO produces a huge amount of informative and educational content for young people and their families affected by Huntington’s disease. All of this content has to be translated into as many languages as possible to ensure that young people have access to the information that may help them live positively despite Huntington’s disease being in their lives. The translations for HDYO are done by the HDYO Translator Team, which consists of many people who share a desire to...Find out more...

HDYO BoardKTYPJPJuly 13, 2020Executive CommitteeHayley Hubberstey – Executive Board, European Chair Hi I’m Hayley, I am from Wirral in North West UK, near Liverpool. I’m a science geek by background and now work in health economics specialising in understanding the impact of rare diseases to help enable access to new treatments.I have been involved with the HD community for about a year and it’s been such a special experience. As part of my current job I’ve have the pleasure to attend and learn from many HD events and conferences. I felt instantly welcomed and at home as a professional new to the community. I have made...Find out more...

Contacting HDYOKTYPJPMarch 17, 2021General contactFor all general inquiries or questions contact info@hdyo.orgSupportIf you would like to talk to someone with someone at HDYO for support or advice then you can contact us at the following email address: support@hdyo.org Feel free to send an email, any discussion with HDYO is confidential.What does confidential mean?Confidentiality means not telling anyone else about what you've said. It means that you can feel safe talking to us about something that is happening to you, or how you feel about something, knowing that no one else will find out.Is HDYO Confidential?We always...Find out more...

Feedback TeamKTYPJPApril 01, 2012HDYO's main aim is to support young people affected by Huntington's disease around the world. In order to provide this support, HDYO produces a huge amount of informative and educational content for young people and their families affected by Huntington's disease.HDYO strives to provide appealing, factually correct, educational material for young people impacted by Huntington's disease. To ensure that young people are receiving the highest quality of information about Huntington's disease possible, HDYO has a Feedback Team consisting of very capable and knowledgeable professionals and...Find out more...

HDYO International RepresentativesKTYPJPJanuary 27, 2015Welcome to the home of our fantastic young HDYO International Representatives! The ‘Reps’ are a new resource in our volunteer team as of 2014. They are a team of young people from around the world who are trained to do two things:Raise awareness of support options for young people and families impacted by HD in the region. Tackle social stigma regarding HD in their local community through positive engagement with the community That positive engagement can come in various forms such as spreading awareness, contacting local professionals and community members, giving talks about HDYO at...Find out more...

Sharing, Licensing and Reusing HDYO ContentKTYPJPDecember 18, 2011One of HDYO's ambitions is to spread high-quality, educational information for young people impacted by Huntington's disease around the world. Therefore we actively encourage individuals and organisations to use HDYO material. HDYO's content has a Creative Commons License which allows individuals and organisations to use HDYO material freely for personal and non-commercial uses. Most of HDYO's content can easily be downloaded or shared. If you want to use HDYO's material on your individual or organisation's website, then you may do this without need for permission from HDYO - however, we...Find out more...

SupportersKTYPJPOctober 13, 2015 HDYO would like to thank those organizations that provide their official support and annual funding for HDYO. Your support allows us to focus on improving the support available for young people impacted by Huntington’s disease.HDYO would also like to thank those individuals or groups that have donated funds to the HDYO project. Without the support of these groups and individuals HDYO would not be where it is today!Your support is instrumental and greatly appreciated by HDYO. We hope the success of our website, content, projects and events has repaid the faith you have shown in us. Thank you!Find out more...

Terms of UseKTYPJPJanuary 19, 2012HDYO's Statement of IntentHDYO intends to provide support and educational information to young people around the world impacted by Huntington's disease.HDYO's DisclaimerAdvice received via the HDYO web site should not be relied upon for personal, medical, legal or financial decisions and you should consult an appropriate professional for specific advice tailored to your situation.HDYO's educational material may be used by individuals or organisations for personal and non-commercial uses that correspond with HDYO's Creative Commons license.The name and mark, HDYO and its attendant logos and...Find out more...

Privacy policyKTYPJPNovember 30, 2018This privacy policy sets out how HDYO uses and protects any information that you give us when you use this website and through our official Social Media Pages.HDYO is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when using this website or Social Media pages, then you can be assured that it will only be used in accordance with this privacy statement.What we collectWe may collect the following information:First and Last Name Contact information including email address Date of Birth Demographic information...Find out more...

HDYO DefinitionsKTYPJPJune 17, 2013Who HDYO supports and howHDYO 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...Find out more...

Forum Terms of UseKTYPJPJanuary 03, 2012HDYO strongly encourages equality and understanding between all members of the forum. Please show respect for people's decisions, experiences and feelings at all times (even when you disagree with their view). Respect each other's rights at all times. Those not showing respect may lose their right to participate on the forum.HDYO Forum Terms & ConditionsTake a moment to review the Terms and Conditions below. Once you start using the HDYO Forum you are deemed to have accepted and agreed to be bound by these Terms and Conditions. HDYO reserves the right to prohibit (ban) you from using this...Find out more...

HDYO Strategic PlanKTYPJPJuly 22, 2013Huntington’s Disease Youth OrganizationStrategic Plan 2013-2015Planning Task ForceB.J. Viau Task Force Chair HDYO Chairman of the Board Minneapolis, U.S.ACatherine Martin HDYO Vice Chair Glasgow, ScotlandBrynne Stainsby Secretary, HDYO Board Toronto, Canada Matt Ellison Founder and Project Coordinator Coventry, EnglandKey TermsHD = Huntington’s Disease HDA = Huntington’s Disease Associations HDYO = Huntington’s Disease Youth Organization YP = Young People HCPs = Health Care Professionals IntroductionThe Huntington’s Disease Youth Organization (HDYO) is a youth-led...Find out more...

HDYO 2012 Annual ReportKTYPJPFebruary 10, 2013 Dear Supporter,The year 2012 has been a hugely significant one for the Huntington’s Disease Youth Organization (HDYO). Having launched on Febraury 7th 2012 this is our first year as an organization, and therefore our first annual review. Setting out to provide a youth-led platform that not only educates and supports young people impacted by Huntington’s disease (HD) around the world, but appeals to them too, is a challenging goal. But it is a goal that I am very proud to say HDYO has made phenomenal progress with.The HDYO website, full of new, colourful, educational content created...Find out more...

HDYO 2013 Annual ReportKTYPJPJanuary 30, 2014 Dear Supporter,What an incredible year it has been for this little non-profit organization. At the end of my message in last year’s review I said that we had laid down some solid foundations on which to grow this organization into something special. Well this year brought with it some special growth at HDYO, and we feel that we have built upon the foundations of last year and begun creating an extremely effective resource for young people impacted by Huntington’s disease (HD) around the world. This year has seen HDYO recruit not one but two full-time employees: Matt Ellison as project...Find out more...

HDYO 2014 Annual ReportKTYPJPJanuary 25, 2015 Dear Supporter,It is a pleasure to bring to you HDYO’s 2014 Annual Review. We are now approaching HDYO’s 3rd Birthday and, as I reflect on where we are now to where we were 3 years ago, it is truly remarkable to see the development and substantial progress that a largely voluntary non-profit, run by young people, has made on the Huntington’s disease (HD) community. HDYO has continued to grow on many fronts throughout 2014 and is providing essential services for young people globally. HDYO.org page views for the past 12 months have followed the trend of increasing year on year. In December...Find out more...

HDYO 2015 Annual ReportEveryoneMarch 25, 2016 Dear Supporter,Reflecting on 2015, it has been another very positive year for HDYO. We made some great strides once again this year and we continue to see a great reaction to our work from young people and families globally. From my point of view there have been two significant projects that we have accomplished in 2015, both have been on our agenda for a while and I’m delighted that we’ve achieved both in this past 12 months. First, we’ve seen the development of HDYO Land, a project specifically for children to learn about HD, which has just launched on our site and aims to fill the gap...Find out more...

HDYO 2016 Annual ReportEveryoneFebruary 04, 2017 Dear Supporter,What a year! There is only one place to start for our review of 2016… youth camps. It is undoubtedly the year of the youth camps. Prior to 2016 we had run two continental sized youth camps in our time as a charity, one in Europe in 2013 and another in North America in 2015. This year we ran both a European Camp and a North American HD Youth Camp back-to-back in August. Both were very successful events as we will highlight in the report. These two camps combined is a fantastic achievement and a lot of work, but we have been fortunate enough to find a way to bring another...Find out more...

HDYO Annual Report 2017EveryoneJune 11, 2019/hdyo-annual-report-2017.pdfFind out more...

HDYO Annual Report 2018EveryoneJune 13, 2019/hdyo-annual-report-2018.pdfFind out more...

StatisticsKTYPJPMarch 23, 2012/statisticsFind out more...