Sky Collins is the heart behind Oklahoma Rare, a statewide community and coalition supporting Oklahoma families affected by rare diseases. She is the mother of a daughter with Malan Syndrome, diagnosed after an 8½-year diagnostic journey, and a passionate rare disease advocate. Her experience navigating that journey inspired her to found Oklahoma Rare.
In her role, Sky helps connect patients, caregivers, and policymakers across the state to drive education, advocacy, and equity in rare disease care. In 2025, Sky spearheaded Oklahoma Rare Voices, a publication sharing the stories of 16 Oklahomans and their families living with rare diseases. For her, putting faces to diagnoses isn’t just symbolic— it’s transformative.
She also serves on the Malan Syndrome Parent Advisory Board, contributes to national research and care efforts, and is a dedicated member of the Rare Disease Diversity Coalition (RDDC), committed to advancing health equity within rare disease communities. With her lived experience, Sky brings to the RDLA Advisory Committee a voice steeped in community, equity, and the deep conviction that our stories are the spark for systemic change.
