After a long diagnostic odyssey, Mara’s son was diagnosed with SHINE Syndrome, also known as DLG4-related synaptopathy, an ultra-rare neurodevelopmental disorder. With limited research and resources, she co-founded the SHINE Syndrome Foundation to improve the quality of life for children and families impacted by this disease through supporting collaborative research among international medical professionals, nurturing a family community and raising worldwide awareness. Watch as Mara shares her story and how the #RAREis Global Advocate Grant has supported her mission.
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