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Effective communication and collaboration within the team can help harness these qualities and drive the team towards its goals.

  • Parenting Through Medical Complexity: A Kabuki Syndrome Guide

    Parenting a child with Kabuki Syndrome often means managing complex medical needs alongside daily family life. With potential challenges ranging from heart conditions and feeding difficulties to immune system concerns and developmental delays, it’s easy to feel overwhelmed. But with careful planning, trusted care teams, and strong parent advocacy, families can create routines that support…

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  • Finding Community Support When Raising a Child with Microcephaly

    Raising a child with Microcephaly can feel isolating, especially when friends or family don’t fully understand your daily challenges. But the truth is—you are not alone. Across the world, countless parents are navigating similar experiences, learning from one another, and building meaningful communities of support. Whether you connect online, in-person, or through healthcare providers, building…

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  • Caring for Mental Health After Pediatric Lyme Disease

    A diagnosis of Lyme Disease, especially when it impacts the nervous system, doesn’t just affect a child’s body—it can also impact their mood, emotions, and sense of safety in the world. Children recovering from Lyme Disease often experience anxiety, frustration, or sadness as they cope with lingering fatigue, pain, or changes in daily life. Supporting…

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