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Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for Dup15q Syndrome.
We are advocates providing support for patients, families and caregivers. We are passionate about personal connections, community awareness, as well as fund and encourage a variety of research studies. Our goal is to improve clinical care and to discover treatments, such as behavioral and drug therapies, targeted specifically for Dup15q Syndrome
Dup15q Syndrome is characterized by having an extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region in combination with a number of symptoms that may include, hypotonia, epilepsy, cognitive delay, motor delays, autism and similar facial features.
Seizures are common in individuals with Dup15q Syndrome. They can happen at any age, but the majority of those will experience their first seizure before age 5, but seizure onset occurs up through puberty and young adulthood in this population. Over half of all people with Dup15q Syndrome will have at least one seizure. There are many different types of seizures experienced by individuals with Dup15q Syndrome. Affected individuals may start with one seizure type, with other types emerging as the individual ages. The prevalence of Infantile Spasms (IS) among a surveyed group of families was unusually high and suggests that Dup15q Syndrome could account for a significant percentage of infants experiencing infantile spasms, If a child has had 2 or more seizures with no known cause, it could be genetic epilepsy—even if epilepsy doesn’t run in the family. Sometimes better seizure management can start with an epilepsy gene panel—a simple test that can be done with just a saliva or blood sample. Learn more at https://canepilepsybegenetic.com.