Welcome to the AGS ECHO Program!

The Aicardi Goutieres Syndrome (AGS) ECHO Program is an innovative and collaborative virtual learning platform designed to democratize knowledge and expertise in caring for individuals affected by AGS. The AGS ECHO Program facilitates regular virtual sessions, where health care professionals come together to discuss complex cases, share insights, and learn from one another. Through this collective approach, we aim to improve the quality of care and outcomes for individuals with AGS worldwide. Creating a platform for universal learning is crucial to ensure that the latest knowledge and understanding regarding the treatment of AGS is disseminated to all communities.

Join us in this exciting initiative to foster a global network of knowledge exchange and support for AGS. Together, we can make a difference in the lives of those affected by this rare genetic disorder.

The AGS ECHO Program is currently in development. For more information on how to participate, please explore our website or contact us directly at echo@agsaa.org. We look forward to partnering with you on this journey of empowerment and discovery in AGS care.

Learn more about the ECHO Model

Recommend a Healthcare Professional

For Physicians:

For physicians who diagnose and manage AGS, the AGS ECHO Program offers an invaluable opportunity to expand your knowledge, share your expertise, and collaborate with other healthcare professionals in the field. By joining the AGS ECHO as faculty, you can actively contribute to shaping the curriculum and best practices, while staying updated with the most recent advancements in AGS research and treatment.

For Families:

If you are a family member or caregiver of someone with AGS, the AGS ECHO Program provides you with a unique opportunity to connect your healthcare professionals with others from around the world who specialize in AGS. Through this program, your team can gain valuable insights, learn about the latest treatment approaches, and access support and resources to enhance the care and well-being of your loved one.

Faculty

Meet the AGS ECHO program's expert faculty, a dedicated team of medical professionals specializing in Aicardi-Goutières Syndrome (AGS). Their expertise ensures healthcare professionals will receive top-tier training to effectively manage AGS and improve patient care.

Min Ae Lee-Kirsch, MD

Dr. Lee-Kirsch, a clinical geneticist, leads a research group at the Technische Universität Dresden that specializes in investigating the molecular mechanisms behind autoinflammation and autoimmunity. Her research particularly focuses on perturbations of the type I interferon (IFN) axis, which includes conditions like AGS. Additionally, Dr. Lee-Kirsch provides clinical care and treatment to AGS patients, combining her expertise in research and patient care for a comprehensive approach to the disease.

Stephen Wong, MD

Dr. Wong, a pediatric rheumatologist at Seattle Children's Hospital, specializes in treating inflammatory brain disorders like AGS. He brings extensive expertise to the care of multiple AGS patients at Seattle Children's Inflammatory Brain Disorders Clinic, providing essential support and treatment for those in need. Dr. Wong's dedication and qualifications make him a trusted resource for this specialized field of pediatric medicine.

Laura Adang, MD, PhD, MSTR

Dr, Adang, an attending physician in the Division of Neurology at Children's Hospital of Philadelphia (CHOP), specializes in the comprehensive care of children diagnosed with leukodystrophies. Her regular leadership in managing AGS patients underscores her commitment to providing the highest level of medical care in this field. Dr. Adang's expertise is a valuable resource for AGS patients and their families seeking expert guidance and treatment.

Davide Tonduti, MD, PhD

Dr. Tonduti, the founder and medical coordinator of COALA (Center for Diagnosis and Treatment of Leukodystrophies and Genetic Leukoencephalopathies), is an expert in the field of leukodystrophy treatment. Notably, he also serves as a principal investigator in an AGS clinical trial, demonstrating his commitment to advancing research and improving the lives of individuals affected by this condition. His multifaceted role ensures comprehensive care and cutting-edge treatment options for patients.

Nicole Jaffe, MD

As a complex care pediatrician at the Children’s Hospital of Philadelphia’s (CHOP) Leukodystrophy Center, Dr. Jaffe treats many children with AGS. Her approach is rooted in providing comprehensive and holistic care, prioritizing each child's ability to thrive and excel, irrespective of their condition. Dr. Jaffe's dedication ensures that AGS patients receive the support they need to lead fulfilling lives.