Search and Rescue
FAST Global Search & Rescue
FAST Search & Rescue (S&R): A global initiative that is being developed by an international consortium of esteemed clinical, diagnostic and genetic experts to identify all individuals living with Angelman syndrome worldwide. It is estimated that over 500,000 individuals are living with Angelman syndrome worldwide, yet only a small portion of these individuals are identified. The goal of FAST Search & Rescue TM is to help understand the true prevalence of Angelman syndrome (globally and within each country). This, in turn, will help to ensure that opportunities for access to education, support, and community resources are available to all.
FAST Global Search and Rescue invites the global Angelman syndrome community to join this initiative.
Your participation helps to understand the prevalence of Angelman syndrome globally but also within your country and region.
Registration, through a landing page within the Global Angelman Sydnrome Registry, takes just one minute and is available in multiple languages. Your information will help to understand the Global Angelman population with regard to age, location and genotype. No data that identifies you, such as your name, exact date of birth or address will be shared outside of the Global Angelman Syndrome Registry platform.Register Now Register Now
Once registered, you will receive a welcome email with details about the Search & Rescue and details of patient organizations in the your location that partner with this initiative, an invitation to participate in the Global Angelman Syndrome Registry and opportunities for Natural History studies or clinics accessible in your region.
For Patient Organizations
We are inviting global partners to join the initiative. Partner organizations will receive customised materials for your website and/or social media to recruit to the search. You will also be listed on the welcome email when individuals sign up from your region, helping to promote your organization and you will receive regular reports for numbers in your region (by age group and genotype where possible).Join the Search Join the Search In partnership with the Global Angelman Syndrome Registry.
For more information visit www.angelmanregistry.info