McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics

May 08, 2026 • Joanna

0:00 | 1:06:11

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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:

How MAS can present differently in boys and girls
Why conditions like Acromegaly can occur in some patients
The challenges of designing clinical trials in ultra-rare diseases
Why finding enough participants for studies can be so difficult
The importance of continued rare disease awareness and research

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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