Dup15q Alliance and Angelman Syndrome Foundation announce the development of the International 15q Clinical Research Network in effort to help those living with 15q Syndromes.

With your donation, families affected by Dup15q Syndrome will continue to have greater access to comprehensive clinical care through the development of The 15q Clinical Research Network.

Thousands of families affected by Dup15q Syndrome and Angelman Syndrome (AS) will soon have greater access to comprehensive clinical care through the development of the 15q Clinical Research Network. The Dup15q Alliance and Angelman Syndrome Foundation are proud to announce that through this collaborative effort, the 15q Clinical Research Network would expand to 20 operating clinics to serve patients with Dup15q or Angelman Syndrome. Dup15q Syndrome and AS are two rare conditions that occur due to a problem with the same region of the 15th chromosome.

Because of that, they share symptoms (developmental delays, GI problems, seizures, etc.) that often require specialized care. Due to the rareness of the syndromes, local general practitioners and even specialized doctors often do not have a thorough knowledge of the complications and treatments. To get the care their loved ones need,some families have traveled great distances.Both foundations realized there were far too many families who were not able to travel to receive specific care,so they embarked on a mission to dramatically expand the clinical reach of the networks and provide truly comprehensive care across the country by combining forces.

This is the not the first time that The Dup15q Alliance and ASF have worked together. Because of the common issues with the 15th chromosome, The Dup15q Alliance and The ASF have co-hosted a research symposium every other year for the past several years. Many researchers that study Angelman Syndrome also study Dup15q Syndome, and the research symposium brings them together to share ideas and collaborate -advancing research and clinical trials.

Vanessa Vogel-Farley, Executive Director of Dup15q Alliance, states: "One of the biggest challenges to those who have 15q related disorders face is finding clinical support that is educated about their needs and that are effective partners in the complex medical care of their loved one. The collaboration between the Angelman and Dup15q Syndrome communities has resulted in the establishment of the 15q Clinical Research Network. This network helps to alleviate the burden of finding quality care, by expanding the number of locations where expert providers are available and establishes a system for transferring care of the patients back to their local providers through education and communication.”

The joint expansion of the 15q Clinical Network will also expand the amount of clinical trial sites in the future, increase research and publications, and add important clinical data that can impact the therapeutic treatments relating to both disorders. As always, our goal is to provide each person with dup15q syndrome the opportunity for the best quality of life, while striving for future treatments targeted specifically to the genes affected in dup15q.