Living with Dandy-Walker Syndrome: Sofia’s Story
Sofia was diagnosed with Dandy-Walker Malformation, one of the more complex forms. In her case, the center part of her cerebellum was like a collapsed tunnel, making communication between the two sides of her brain difficult. On the right side, her cerebellum appeared like a crumpled wing due to the presence of a cyst.
When Rare Becomes Real .. Understanding Jamaur Syndrome and Its Ripple Effects
Discover how Jamaur Syndrome affects children and families, and learn how GeneticsRose provides hope, resources, and community support for rare conditions.
The Hidden Costs of Rare Genetic Disorders, How Families Shoulder the Weight
Explore the emotional, financial, and mental health challenges rare genetic disorders create for families, and how GeneticsRose helps lighten the burden.
Turning Pain Into Purpose, How Kamiyah’s Fight Sparked a Movement of Hope
Learn how Kamiyah’s journey with Jamaur Syndrome inspired GeneticsRose to bring awareness, resources, and hope to families facing rare genetic battles.with an idea.
From Diagnosis to Daily Life: 5 Ways Families Can Find Strength Through Rare Challenges
Find practical tips and encouragement for parents navigating rare genetic diagnoses, and see how GeneticsRose empowers families to thrive with hope.
