The Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Canada, and the Edmond and Lily Safra Children’s Hospital of the Sheba Medical Center near Tel Aviv, Israel, bring to 10 the number of clinic locations globally, including eight in the United States. Collectively, the clinics have seen more than 500 patients to date.
By teaming with leading healthcare and research institutions nationwide, the ASF founded Angelman Syndrome Clinic Network to provide AS patients comprehensive medical care throughout their lives.
As ASF network membership requires, clinics are staffed with a variety of AS specialists including at least one clinical geneticist, neurologist, psychiatrist, psychologist, speech language pathologist, physical and occupational therapist, genetic counselor, social worker, and nutritionist.
The clinics also are available to AS experts and patients for research clinical trials, in which the clinics’ medical teams participate.
According to the foundation’s website, AS clinics are developing Angelman standards and consensus of care, which will be published when completed for families and their physicians.
“AS clinical experts understand from first-hand experience the natural history of AS — seeing and knowing the trajectory of AS from birth through adulthood — while providing excellent, comprehensive and appropriate medical care specific to AS,” the website states.
“This clinical experience and collaboration between all of the AS clinics within the ASF AS clinic network are critical to developing standards of care and guidelines for our loved ones with AS.”
Eileen Braun, ASF executive director and mother of a young woman with AS, said the clinics often offer lifesaving care.
“No other resource like this exists for AS families, so to broaden the network internationally is critical for families around the world,” she said in a press release.
“The knowledge base and clinical data provided by the ASF AS clinic network is imperative to move research forward, from study design to implementation through clinical trials.”
With the overarching goal of enhancing patient life quality, the clinics work to ease AS symptoms such as seizures and behavior and sleep problems. They also help families find the best educational programming for their loved ones with AS.
Jane Summers and Erick Sell, co-founders of the AS clinic at CHEO, said partnering with the clinic network has resulted in valuable collaboration and information sharing. “This has helped us tremendously to provide the exceptional, expert care for our patients with Angelman syndrome that we are committed to delivering.”
Gali Heimer, pediatric neurologist and head of the AF clinic at the Safra Children’s Hospital in Tel Hashomer, Israel, said knowledge and experience are key, particularly when dealing with rare disorders such as Angelman.
“I am certain that this collaboration will contribute significantly to the quality of care that AS patients receive worldwide, and it will also aid and facilitate AS-related clinical trials and the search for specific novel therapeutics for this disorder,” Heimer said.
The clinic was established in partnership with, and the sanction of, the Israeli Angelman Syndrome Foundation.
CHEO is a global leader in complex pediatric healthcare and research. The Safra Children’s Hospital is renowned for cutting-edge medicine, state-of-the-art facilities, and advancing research, especially of rare disorders.
The ASF’s goal is to advance the awareness and treatment of AS through education and information, and support for AS patients and their families. It sponsors AS research seeking an AS cure.