Huntington’s Disease (HD) is often described as a rare neurodegenerative disorder. But for caregivers and family members, this description turns out to be vague and the “basics” of HD quickly prove far from basic. HD is very complex; its symptoms change over time, and its impact extends far beyond the individual diagnosed. This is why having a clear, accurate, and holistic understanding of HD is essential for anyone supporting someone living with the disease.

Recognising how difficult it can be for caregivers and professionals to access trustworthy, experience-based information about HD, we created the HD Academy, a free e-learning platform. Many families and clinicians report feeling unprepared, isolated, or unsure where to turn for accurate guidance. The HD Academy brings together the expertise of experienced professionals and the lived experiences of HD families to provide free, clear, accessible, and practical education — all in one place.

One of the nine available courses is What is Huntington’s Disease? (HD Basics), which aims to guide learners through the essential concepts needed to understand HD. In this course, a wide range of topics, are covered: 

• What causes Huntington’s Disease, including how the huntingtin gene mutation and CAG repeat expansion work.
• How HD affects movement, thinking, emotions, and behaviour, and why the disease presents differently in each person, even within the same family. 
• Common early signs and challenges in obtaining a diagnosis, especially when symptoms overlap with mental health conditions.
• The role and importance of genetic counselling, and what individuals at risk should know when deciding whether to undergo genetic testing.
• How HD progresses through four main stages of the disease, what changes and challenges to expect over time, and strategies to manage them. 
• An introduction to Juvenile Huntington’s Disease (JHD), including its unique symptoms and different progression.
• How caregiving needs evolve, from early independence to full-time support.
• The importance of multidisciplinary care, involving neurology, psychology, physiotherapy, occupational therapy, speech therapy, nutrition, and oral care professionals. 
• Practical insights and lived experiences shared by experts and HD family members.

 

This course aims to give caregivers and professionals a strong, compassionate, and experience-based foundation to understand HD in its full complexity.

Sign up for the HD Academy and explore the full HD Basics course here.