The Huntington’s Disease (HD) community is a big network of people impacted by the disease – either personally or professionally. We call this network of people Huntingtonians coined by Alice Rivières – since we are all impacted by Huntington’s in one way or another.
The patient community represents people personally affected by HD and the research community consists of professionals working with HD. These two communities are further divided into smaller organizations, networks, studies and groups.
The HD community can be a tricky jungle to maneuver and it is easy to get lost in the acronyms. Therefore, we have tried to make an overview of some of the networks that exists inside the HD community. Underneath you can find some of the patient and research organizations.
The patient community
- The European Huntington Association (EHA) is an umbrella organization representing local European HD associations.
- Our aim is to represent HD affected families all over Europe and build relationship across borders.
- Through our project Stronger Together we aim to build a bridge between families impacted by HD and the research community – to create a common ground of “Huntingtonians”.
- Local Huntington’s Disease Associations is found all over Europe and the world.
- Their aim is to provide information and support to people affected by Huntington’s disease in their country or region.
- If you have any questions about Huntington’s disease you can contact your local association.
- The Huntington’s Disease Youth Organization (HDYO) is an international non-profit organization – mostly run by young people impacted by HD for other young people.
- HDYO aim to specifically provide support and information for young people around the world impacted by Huntington’s disease.
- HDYO is financially supported and backed by local Huntington’s Disease Associations around the world.
The research community
- CHDI Foundation is a science management organization devoted to Huntington’s disease.
- Their mission is to develop drugs that will slow the progression of the disease.
- CHDI is the sponsor of the European Huntington’s Disease Network (EHDN) and of the worldwide Huntington’s disease observational study and registry: Enroll-HD.
Learn more about CHDI:
- The EHDN is a nonprofit research network.
- Their mission is to advance research, facilitate clinical trials and improve clinical care in HD.
- The organization creates a platform where scientists, clinicians, patients and families can collaborate on studies.
- EHDN collaborates with Enroll-HD, where some of EHDN study sites are used to conduct the study.
Learn more about EHDN:
- Enroll-HD is a worldwide observational study and registry for Huntington’s disease families.
- The aim of the study is to better understand the progression of HD, to get insight into the development of new drugs, to improve the design of clinical trials and to improve clinical care for HD patients.
- The study is sponsored by CHDI and collaborates with EHDN.
Learn more about Enroll-HD:
- HDBuzz is a high quality webpage about Huntington’s disease, presenting research news in plain language – written by HD clinicians and scientists.
- Their aim is to help HD affected to get a better understanding of the latest research news.
- EHDN provides HDBuzz with non-financial administrative assistance and advice. They also provide with translation support.
Learn more about HDBuzz and Huntington’s Disease: