Outside of Australia there are many organisations working for people affected by HD. The goals of these organisations vary. Some work towards finding treatments and cures for HD, others seek to provide information and support for people affected by HD, whereas some help to fund researchers across the world to advance our understanding of HD. We’ve included some links below so you can keep up to date with each organisation and its goals.
The EHDN is a not-for profit network dedicated to advancing HD research, conducting clinical trials and improving care for people affected by HD, across Europe and abroad. The network is made up of clinicians, researchers, and people affected by HD, working together to accomplish their goals.
The HDSA is a nonprofit organisation based in the United States that is dedicated to improving the lives of people affected by HD. The organisation provided people with community services, educational resources and advocacy. In addition, the HDSA supports HD research both in America and abroad.
HSG is one of the largest clinical research networks focused exclusively on Huntington’s disease. The organisation supports scientists across all research endeavours, from basic science, to clinical trials, disease prevention and clinical care.
Huntington’s Disease Youth Organisation (HDYO) -no link
HDYO is a non-profit set up to provide support and education to young people affected by HD around the world. HDYO do this by providing professional support online, creating educational content for all age groups (kids, teens, young adults, parents and professionals), making content available in as many languages as possible, and hosting events like camps and congresses around the world. Ultimately, HDYO aims to connect young people affected by HD with each other and with their local organisations.
CHDI Foundation – no link
The CHDI Foundation is a philanthropically funded organisation that exists to drive research into treatments for Huntington’s Disease. CHDI has locations in Los Angeles, New York and New Jersey, and it runs its own research program as well as funds the research of other organisations focused on HD. CHDI Foundation funds the Enroll-HD study, a worldwide study that is going on here in Australia in Perth, Sydney, and Melbourne.