Mary Chapman,  features writer—

Supporters globally are poised for International Angelman Day (IAD), set aside annually on Feb. 15, to call attention to Angelman syndrome and the 500,000 people globally estimated to be affected by the complex neurological disorder. In addition to spreading awareness about Angelman, the event seeks to unite and mobilize…

The first patient organization for those living with Angelman syndrome in the Middle East and North Africa — a geographic region commonly known as MENA — has been established in Dubai, in the United Arab Emirates. The MENA Angelman Association will cover more than 20 countries with an area of…

A $5 million gift is supporting a University of California San Diego (UC San Diego) gene therapy initiative aimed at finding novel treatments for children and adults with genetic disorders. The launch of the Gene Therapy Initiative, made possible by the donation from the Nancy and Geoffrey Stack Foundation,…

Angelman Syndrome Foundation Canada (ASF Canada), formerly the Canadian Angelman Syndrome Society (CASS), officially opens on Oct. 21 with the Stronger Together Charity Ball, an evening of celebration and inspiration. The black-tie event, which is intended to raise awareness about Angelman syndrome, also kicks off ASF Canada’s affiliation…

To help patients and their families make the most of available treatments, the clinical diagnostics laboratory Baylor Genetics is offering an analysis of genes related to epileptic disorders such as Angelman syndrome. The disease-specific panel, which can be used in outpatient settings, is intended to help clinicians determine…

The Angelman Syndrome Foundation (ASF) is seeking applicants for its first Jacob Pritzker Fellowship, a program established to address the growing need for physicians with knowledge about Angelman syndrome, a complex neurological genetic disorder. The program will award at least one fellowship of up to $100,000 annually…

A year after it was established by the Center for Drug Evaluation and Research (CDER), the Accelerating Rare disease Cures (ARC) Program is seeking to build on efforts to bridge the gap between patients’ pressing needs and the challenges of developing rare disease treatments. The U.S. Food and Drug…

JettSet1 Enterprises is partnering with preclinical stage biopharmaceutical company Biom Therapeutics to help it develop BIO017, a plant-derived cannabinoid treatment candidate for Angelman syndrome. JettSet1 has partnerships across various industries, from biotech and film to beverage and real estate. It was founded earlier this year by George…

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

A new medical network connects Angelman syndrome (AS) and dup15q syndrome patients with specialized, high-quality care globally. The initiative, called the LADDER Learning Network, derives from a partnership between the Angelman Syndrome Foundation (ASF) and Dup15q Alliance. Angelman is caused by a missing or malfunctioning UBE3A…