Angelman Syndrome (AS) is a neurogenetic disorder. It’s not fatal, but prevents patients’ from living independently. It causes neurological impairment, seizures, and balance issues among other problems. It’s caused by a singular missing gene.
The Angelman Syndrome Foundation (ASF) has been dedicated to providing AS patients and their families more options, better care, and continuous support. They are currently working to develop standards of care for the condition. The ultimate goal is, of course, to find a cure. But in the meantime, any research that works to improve the worst of patient’s symptoms is beneficial for the community. For ASF, it’s not just about the ultimate cure, it’s about improving the quality of life for patients and their families as they wait for new developments.
In order to help accelerate research, ASF has established the Angelman Syndrome Clinic Network. The hope is that by increasing communication between AS specialists at various locations, we will increase collaboration, and improve the research process. It started with 8 clinic sites across the United States, but the network has just spread internationally.
A Growing Network
The Edmond and Lily Safra Children’s Hospital of the Sheba Medical Center in Tel Aviv, Israel and the Children’s Hospital of Eastern Ontario in Ottawa, Canada have just joined the AS Clinic Network. This expansion will not only aid in the communication between experts, it will help the facilitation of clinical trials.
“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.”
Like all rare conditions, experts are essential for driving research forward. For AS, these experts include a wide range of specialists including neurologists, pulmonologists, and gastroenterologists to name a few. But of course, these experts live all over the world, working at various clinic sites.
Hopefully, the AS Clinic Network will continue to grow and expand to other nations and geographic areas. In the end, the greater communication- the greater progress for AS.
You can read more about the clinic network and the two recent international additions here.