News

Rare Disease Day Events Bring Awareness, Equity to Patients

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

FAST Science Summit Brings Message of Hope and Raises Funds

Researchers brought a message of hope for the Angelman syndrome community as they discussed advances in treatment and scientific knowledge at the recent 2021 FAST Global Science Summit and Gala in Austin. Hosted by the Foundation for Angelman Syndrome Therapeutics (FAST), the annual event is an opportunity for members…

Prepare to Light Up Buildings for Rare Disease Day 2022

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the U.S. sponsor for Rare Disease Day on Feb. 28. The annual awareness day spotlights approximately 7,000…

Brain Wave Abnormalities Tied to Symptom Severity, Age at Seizure Onset

Stronger brain wave abnormalities are significantly associated with more severe cognitive, motor, and communication symptoms and earlier seizure onset in children and adolescents with Angelman syndrome (AS), a study shows. These findings support brain activity abnormalities as a core Angelman feature, and they support the use of electroencephalography (EEG) as…

ASF Family Fund Opens to Support Angelman Patients in UK

Angelman syndrome families in the United Kingdom may now request financial support for items — like tablets or adaptive equipment — that could improve a patient’s life quality under an expansion of the Angelman Syndrome Foundation (ASF) Family Fund. The ASF fund was opened in 2019 to help…