What happens when one rare condition affects the bones, skin, hormones, and development—but looks completely different in every patient?
“In this episode of Rare Connection, Joanna is joined by Dr. Adebola Giwa, a pediatric endocrinologist, physician-scientist, and clinical lead for rare disease drug development at Atossa Therapeutics. He brings more than 15 years of experience in endocrinology, musculoskeletal disease, and innovative therapeutic development for rare conditions.”
Together, they explore McCune-Albright Syndrome (MAS), a rare mosaic genetic condition that can affect multiple systems throughout the body. The conversation covers the variability of MAS, including café-au-lait skin findings, fibrous dysplasia, endocrine complications, and why no two patients experience the condition the same way.
A major focus of the discussion is precocious puberty, often one of the earliest signs of MAS. Joanna and Dr. Giwa discuss how hormone signaling differs in MAS, why traditional treatments do not always work as expected, and how different therapeutic approaches—including Tamoxifen, aromatase inhibitors, and endoxifen—are being explored.
The episode also touches on:
Whether you are part of the rare disease community, a healthcare professional, researcher, caregiver, or someone wanting to learn more, this episode offers insight into the complexity of living with and treating McCune-Albright Syndrome.
This podcast is for educational and awareness purposes only and should not replace medical advice from a qualified healthcare professional.
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