Share your story in the Global Angelman Syndrome Registry
The Global Angelman Syndrome Registry is the first online Patient Driven registry for Angelman Syndrome; putting power in the hands of those who care for someone with the Syndrome.
Parents and caregivers will drive the collection of data by volunteering details that will form what we expect to be the largest collection of information on Angelman Syndrome to date.
The Registry will provide a tool for understanding developmental progress, medication and seizure management. More importantly, it will provide an invaluable resource to advance the search for therapeutics.
The timing is perfect; with pharmaceutical companies anticipating drug trials to treat the syndrome, the Registry provides the perfect mechanism to analyse, recruit and measure effectiveness of treatments.
The success of the registry depends on the involvement of as many families from the global Angelman Syndrome community as possible.
This registry represents an important step towards better outcomes for individuals with Angelman Syndrome and their families.
To learn more and join the registry: https://angelmanregistry.info/