Know to Act is a free, online guide created by the European Huntington Association for anyone touched by Huntington’s Disease — people living with HD, families, partners, people at risk, caregivers, professionals, etc.
We’ve broken the most important topics into four chapters, each available at two levels: a starting point if HD is new to you, and a deeper read for when you want more.
Because the more you know, the more you can decide, participate, and act — on your own terms.
You don’t have to read it all. You don’t have to read it in order. Start with what matters most today.
Every chapter comes in two versions:
Both levels stand on their own. Read one, read both and come back when you need to.
The foundation: what Huntington’s disease is, and how it affects the people who live with it.
What you’ll find: A clear introduction to HD — what causes it, how it shows up in the body and mind, and what to expect over time. Level 1 covers the essentials in plain language. Level 2 explores the biology, the symptoms, and how HD is understood by doctors and researchers today.
Knowing, not knowing, and the choice that belongs to you.
What you’ll find: What genetic testing is, how it works, and what the result can — and can’t — tell you. Level 1 walks through the basics of the test and what to consider before deciding. Level 2 goes into the types of testing available (predictive, diagnostic, prenatal), the counselling process, and the questions that often come up along the way.
How research works and what taking part on it can look like for you.
What you’ll find: An introduction to how clinical trials for HD are designed, run, and evaluated — and what participating in research really involves. Level 1 explains what a trial is, why trials matter, and the key terms you’ll come across. Level 2 unpacks trial phases, placebos, endpoints, and how results are interpreted — so you can read research news, and consider taking part, with more confidence.
From headline to evidence: how to find your bearings in HD research over time.
What you’ll find: A guide to making sense of the HD research landscape — where to look, who to trust, and how to tell solid science from a misleading headline. Level 1 introduces the key sources and organisations. Level 2 helps you read studies more critically and stay informed without getting overwhelmed.
At EHA, we believe knowledge is one of the most empowering things we can offer the HD community.
Know to Act was created to translate complex medical and scientific information into something clear, honest, and useful — without losing the warmth of a human voice on the other side. Because knowing is what makes acting possible.
Every seed we plant is a step towards change.
The rest will be here when you need it.