Global Angelman Syndrome Registry
See the power our voices have when we speak together
When the whole world is silent, even one voice becomes powerful.
A voice speaking alone is quiet.
A thousand voices is a roar.
500,000 people are estimated to have Angelman Syndrome worldwide.
Imagine the power our voices have when we speak together.
Today, we’re asking you to amplify your voice.
To many of us, a data set might seem boring, even pointless. A series of answers to survey questions can’t change the world, or cure a disease – right?
Data is what got us to the moon. Data is what has allowed us to develop cancer treatments. Data demonstrates how many people need a cure. Data is set to revolutionise healthcare as we know it. To us scientists, your data is gold. Your data is your story. If a picture is worth a thousand words, your answers to our survey are worth a cure.
It is impossibly hard to live with a rare disease, and even harder when the person suffering is your beloved child. Before the internet, parents of children with a rare disease often had to go through their experience alone – but not anymore. You can join voices with every other patient worldwide, and you can be heard together.
We need more people from around the world to sign up to the Registry so that we can report accurate figures of those with Angelman Syndrome and advocate for a cure.
Parent Registration Form
Who are we?
Helen (Honey) Heussler
Children’s Health Queensland Hospital and Health Service
Professor Matthew Bellgard
Queensland University of Technology
We are an online platform designed to capture patient information on Angelman Syndrome on a global scale.
We collect data from people like you who have lived experience of Angelman Syndrome and we use it to advocate for a cure and to provide researchers globally with access to a database of patients for research.
Thanks to technology, you can participate in this important research from the comfort of your own home rather than requiring your attendance at a specialised research clinic.
The Registry collects three types of information from families
This data is not only essential to demonstrate the need for a cure, but it also provides a much-needed registry of patients interested in potential clinical trials. We work with the Queensland University of Technology and can provide you with opportunities to contribute directly to a world where Angelman’s Syndrome is fixed.
Take 1 minute out of your day to move us 1 step closer to a cure.