Dup 15Q Alliance

“A complete copy of the form 990 is provided to board members for review before filing.”

“The organization has a written conflict of interest policy. The director and all officers are required to disclose annually any interests that could give rise to conflicts. The organization regularly and consistently monitors and enforces compliance with the policy.”

“The organization offers all of its information for public inspection upon request. The organization will report its governing documents, conflict of interest policy and financial statements on their webpage upon request.”

“We empower individuals living with dup15q syndrome and other related rare diseases to reach their full potential by advancing breakthrough research and life-changing therapeutic treatments, supporting families affected by dup15q, and promoting advocacy. We envision a world where families, clinicians, and advocates enable individuals with dup15q to live full and productive lives.”

“Education, outreach, & family support dup15q alliance has been providing support and advocacy to families affected by dup15q syndrome for over 28 years. We continue to offer a variety of resources and support options to help uplift and engage our community and assist families in navigating the various challenges of the dup15q journey, including: new family support calls with our intak manager, who helps mentor new dup15q alliance families; parent to parent ambassadors who have completed a 6-week child neurology peer support training in order to support fellow dup15q families; licensed clinical professional counselor services at no cost to our families; educational information about dup15q syndrome such as symptoms, diagnosis, and treatment options; help with financial planning and navigating school iep's; community connection support groups, sibshops, and vip sibling kits for families of those affected by dup15q syndrome; regional gatherings for families and caregivers; and resources for the transition into adulthood.”

“Ladder learning network through its specialized clinics, ladder learning network connects families to medical professionals across the globe who have extensive experience treating dup15q syndrome and angelman syndrome. With 18 clinics in the us, six partner clinics abroad, and new clinics being added, the network includes specialists like clinical geneticists, genetic counselors, neurologists, psychiatrists, psychologists, speech pathologists, physical/occupational therapists, nutritionists and more. Dup 15q alliance partnered with asf to launch the ladder learning network in order to: connect families with highly specialized medical providers who have experience in treating these two rare disorders, which has historically been difficult to find; connecting medical providers with one another regularly, so they can share information about their most challenging cases; creating and maintaining the ladder database, a global network of patient data; and connecting the industry with much needed locations to host clinical trials, with the benefits of having patients in place when they become available.”

“Research grants dup15q alliance continues to promote research to significantly increase understanding of chromosome 15q11.2- 13.1 duplication syndrome and to create therapeutics to improve the lives of all affected individuals. We formally endorse and fund research, disseminate research information, and promote opportunities for dup15q alliance families to participate in research studies and registries. Research grants funded by dup15q alliance during 2022 include: additional funding for the newborn screening project working toward the addition of chromosome 15 conditions to early check, a flexible framework amenable to screening for a variety of conditions at birth; the ucla distefano fellowship to conduct remote assessment of developmental and clinical characteristics of children with dup15q syndrome; initial funding for a rare epilepsy partnership award granted to dr. Ype elgersma's team at erasmus medical center to develop a new mouse model to study the interaction and dose effect of the ube3a gene; a comprehensive research landscape analysis including current research targets, researchers, projects, and funding sources; and the ahn family scholarship awarded to an undergraduate at uc davis studying the epigenetics of neurodevelopmental disorders.”