Angelman Syndrome Foundation

Angelman syndrome (AS) is a rare neurogenetic disorder caused by the loss or malfunction of the UBE3A gene on the maternal chromosome 15. It affects approximately 1 in 15,000 people.

Individuals with AS typically experience developmental delays, severe speech impairment, movement and balance challenges, sleep disturbances, and seizures—but they are also known for their joyful personalities and frequent laughter. While life expectancy is near typical, ongoing care and specialized therapies are essential for improving quality of life.

The Angelman Syndrome Foundation is the leading nonprofit dedicated to improving the lives of individuals with AS and their families through research funding, education, advocacy, and community support. Their goals are advancing awareness, education, support, and research toward treatments and a cure for Angelman syndrome.

What They Do:

• Research: Over $17 million invested in studies driving progress toward treatments and a cure.

• ASF Clinics: Provide coordinated, specialized care through a network of clinics that understand the unique needs of individuals with AS.

• Family Fund: Offers financial assistance for equipment, therapies, and services that enhance quality of life.

• Education & Resources: Webinars, toolkits, and family guides to support caregivers and professionals.

• Community Engagement: Angelman Strong events unite families nationwide to raise awareness and build community.

Impact:

• Global network of multidisciplinary clinics

• Direct support for thousands of families worldwide

• Recognized by national rare disease organizations for transparency, leadership, and impact

Condition Awareness & Advocacy

Here is a list of conditions this partner raises awareness and advocacy for: 

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