Building Community
Creating Hope for Harel-Yoon Syndrome
Advancing Research
The ATAD3A Patient Advocacy Alliance was established in 2025 by an international group of parents and loved-ones of children with ATAD3A mutations.
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We are entirely volunteer-run and driven by the desire to find treatments for this rare condition, improve patients’ quality of life and support other families like ours.
We are guided by the ATAD3A Medical Advisory Board, which is made up of experts in research, genetic counseling and clinical treatment of patients with ATAD3A mutations.
Mission
The ATAD3A Patient Advocacy Alliance is dedicated to improving the lives of those affected by ATAD3A-related disorders through advocacy, education, global collaboration, and support for groundbreaking research and enhanced medical care.
Goals
The Alliance’s Board of Directors developed a strategic plan in September, 2025, setting our goals for the next five years. We focused on five strategic priorities:
Patient and Family Support
Treatment Advancement
Clinician and Researcher Engagement
Informational Resources
Diagnosis and Early Detection
Meet the Team
We are honored to introduce the Medical Advisory Board for ATAD3A, led by Dr. Tamar Harel and Dr. Wan Hee Yoon—the pioneering clinicians who first identified and described Harel-Yoon syndrome. Their groundbreaking work has laid the foundation for understanding ATAD3A-related disorders, and their continued leadership ensures our mission is guided by the highest level of scientific and clinical expertise. Together with a dedicated team of medical professionals, our advisory board is committed to advancing research, improving care, and supporting families impacted by ATAD3A.
Our Team.
The Board of Directors of the ATAD3A Patient Advocacy Alliance is made up of passionate parents, patient advocates, and dedicated leaders who are deeply committed to advancing research, raising awareness, and supporting families affected by ATAD3A-related disorders. Their lived experience and unwavering dedication drive our mission forward, ensuring that the voices of patients and families remain at the heart of everything we do.
