Search Rescue

For Families

The FAST Search & Rescue initiative brings together diagnosed, undiagnosed, misdiagnosed or unconnected individuals with Angelman syndrome.

Why should I join

By bringing families into a global Angelman syndrome community, FAST Search & Rescue provides connections to access to local and global communities and, global centers of excellence for clinical care.

FAST Search & Rescue supports pharmaceutical engagement by providing industry partners with accurate, de-identified demographic information to support future clinical trials and encourage global patient connections.

Participation in the initiative include:

Standard of Care for Angelman Syndrome

Access to patient-centered care relative to their diagnosis through the recently published Standard of Care for Angelman Syndrome.

global and local Angelman community

Access to the global and local Angelman community.

worldwide trials

Participation in worldwide trials and research focused on finding better treatments and a cure for Angelman syndrome

Advocacy opportunities

Advocacy opportunities.

Not sure if your loved one has Angelman Syndrome? Take this simple questionnaire to compare your understanding of AS and find out your options for diagnosis.

FAST Global Search & Rescue

Is my data safe

The Global Angelman Syndrome Registry (the Registry) provides the platform to collect the basic demographic data required for this initiative, such as names, address, date of birth and genotype (deletion, mutation etc). This allows us to utilize a data curator, medical-grade security and ethics and all information received is encrypted and stored on a secure server.

If you are already a participant in Registry, you are already counted in FAST Search & Rescue. If you are not, once you join FAST Search & Rescue, you will be invited to participate in additional data capture elements of the Registry, this additional participation is voluntary.

All Registry data disseminated to the public domain will be aggregated and de-identified, as patient names, dates of birth and other information which could potentially lead to the identification of participants will be removed from the analysis and replaced with a unique identification number.

Deidentified data will be provided to the FAST Search & Rescue team, as well as partnering patient organizations and affiliates to report on known incidence rates in each country to measure the progress of the initiative.