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Angelman Clinic opens at Cedars-Sinai Guerin Children’s

January 13, 2024

Angelman Clinic opens at Cedars-Sinai Guerin Children’s

The Angelman Syndrome Foundation is proud to announce a new collaboration with Cedars-Sinai Guerin Children’s to launch a new clinic for patients with Angelman syndrome, a rare neuro-genetic disorder.

The clinic is led by Cesar Ochoa-Lubinoff, MD, MPH, director of Developmental-Behavioral Pediatrics at Cedars-Sinai Guerin Children’s, who previously co-directed the Angelman syndrome clinic at Rush University Medical Center in Chicago. The new Guerin Children’s clinic includes specialists from neurology, genetics, developmental medicine, diet and nutrition, gastroenterology, speech, occupational therapy, behavioral therapy, physical therapy and social work.

“In my experience, families facing Angelman syndrome are resilient, but they need a supportive medical team in place,” Ochoa-Lubinoff said. “With this multidisciplinary clinic, we hope to bring the highest level of care in the most comprehensive and easily accessible way possible to patients experiencing this severe condition.”

Angelman syndrome is a rare neuro-genetic disorder that occurs in 1 in 15,000 live births (or 500,000 people worldwide). Common signs and symptoms, such as walking and balance disorders, gastrointestinal issues, seizures and speech impairments, usually appear in early childhood. It is caused by a loss of function of the UBE3A gene in the 15th chromosome derived from the mother. It shares symptoms and characteristics with other disorders including autism, cerebral palsy and Prader-Willi syndrome.

“Today, as we inaugurate the Angelman Syndrome Clinic at Cedars-Sinai Guerin Children’s under the visionary leadership of Dr. Cesar Ochoa-Lubinoff, we embark on a journey of hope, compassion, and transformation,” said Amanda Moore, CEO of the Angelman Syndrome Foundation. “Dr. Ochoa-Lubinoff’s unparalleled experience sets the stage for this clinic to be a beacon of care and innovation, offering a lifeline to those touched by Angelman syndrome. Together, we will illuminate the path to a brighter future for the Angelman community, one filled with possibilities and unwavering support.”

Cedars-Sinai Guerin Children’s is committed to contributing to the Linking Angelman and Dup15q Data for Expanded Research (LADDER) data repository, as well as working to develop partnerships with physicians at Cedars-Sinai who treat adults with Angelman syndrome. At 25 years old, patients will transition care to an adult physician.

The Angelman Syndrome Clinic is at Cedars-Sinai in the Steven Spielberg Building, located at 8723 Alden Drive, Los Angeles, CA, 90048. Families may make an appointment by calling 310-423-7779.

 

See details about the clinic at Cedars Sinai Guerin Children’s.