In this section, we have compiled different sorts of information (articles, videos, podcast, online forum) to help HD families adjust to this diagnosis and get to know the HD global community. You will find valuable resources that provide psychological support, as well as practical tips to better cope with HD challenges. We believe that the more tools you have to help you face HD, the better quality of life and well-being you will achieve.
Because we understand the importance of building the capacities of health care providers to understand HD and address HD complexity, we added to this section useful contents to support professionals in their daily practice.
Link added on: 02/04/2022
Carers UK - Making Life Better for Carers
Carers UK is a national membership charity for carers that provides expert advice, information and support to formal and informal carers from local communities throughout the UK and online for the past 50 years
Here you will find a supportive online community of current and former unpaid family carers who understand the ups and downs of caring. Whatever the time of day or night, you’ll find this a welcoming place to connect with other carers, support each other and signpost each other to relevant information, advice and support.
NOI Huntington
NOI is an Italian Association run entirely by young people for other young people, which has as its main objective that of uniting young people who have in common the experience of the disease. This youth network works in close collaboration with the international youth organization HDYO.
Here you will find articles and personal stories about living with HD.
DingDingDong
Dingdingdong is a French organization created in order to provoke such a resumption of certain ways of thinking and doing that concern this so-called orphan disease as much as much more widespread diseases such as Alzheimer’s and Parkinson’s. Our goal is to collectively come to grips with an experience whose users are the scouts and which potentially concerns us all: living with a genetically announced disease.
Here you will find articles and personal stories about living with HD.
Huntington’s Disease Youth Organization
The 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. Many different topics relevant to young members from HD families, going from “Being at Risk”, “Emotional Wellbeing”, “Coping” or “Genetic Testing Checklist”
Here you will find information about what is HD and how does it affect people, its history and the genetic features of HD.
The Impact on Young People
Young Couples Impacted
Talking about HD as a family
Post-Genetic Testing
Loading Docs
This is an unique initiative that produces short documentaries that captivate and inspire audiences locally and internationally, while developing and promoting New Zealand filmmaking talent.
“With a 50% chance of inheriting a fatal disease, is it better to know your future or live in the moment?”
Huntington Study Group
HSG is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease.
Here you will find information about clinical trials and research, educational videos and learning about living with HD, quiz and other resources.
Family Planning in HD
Receiving a Diagnosis of HD
Huntington Society of Canada
This Canadian not-for-profit charitable organization works to improve the quality of life for those affected by Huntington disease. HSC is trying to facilitate excellent support services, providing access to the best and most up-to-date educational resources, increasing national and global awareness, advocacy and investing in promising research.
Here you will find information about what is HD, clinical trials and research, events and news about HD, multimedia and other resources.
Who Is Your Huntington Hero?
Anzovino Family Story
Huntington’s Western Australia
Huntington’s WA was formed specifically to improve the quality of life for people with Huntington’s Disease, their families and carers in Western Australia. The Association is dedicated to providing individual advocacy, support and education for the Huntington’s community.
The following videos and information guides are shared resources made available through many Huntington’s Associations across the globe
Scottish Huntington’s Association
SHA is the only charity in Scotland dedicated exclusively to improving the lives of people who are impacted by Huntington’s disease. The charity’s family-centred approach and focus on delivering change for local communities is recognised and replicated at national and international levels as a model of excellence in the care and support of the HD community.
Take a look at some of the experiences of people living with Huntington’s Disease within Scotland and the families which are affected by the condition.
HOPES - Huntington's Outreach Project for Education at Stanford
HOPES is a student-run project at Stanford University, California, dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to patients and the public.
Here you will find information about the science of HD, research, diet and lifestyle in HD patients, conferences and podcasts, etc.
Help 4HD Live!
Help 4 HD Live! is the first international radio program ever created for the Huntington’s disease community. The goal is to deliver credible education, information, and resources to our global HD community, care providers, and peers
Here you will find articles and personal stories about living with HD.
Huntington Disease Lighthouse Families
This Forum provides up-to-date information about research on the treatment, care, diagnosis of Huntington’s Disease. Also offers online support group and chatroom.
Here you are welcome to discuss any issue related to Huntington’s disease. You must be registered to participate.