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Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma
Manage episode 422308338 series 3485028
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Join me as I talk to Sky , mother of 3 children. about her daughter Presley's diagnosis with Malan Syndrome. Malan Syndrome is an overgrowth disorder that is considered as ultra rare. Their are only 300 cases of this condition world wide. Join me as I ask about her 8 year journey to diagnosis, Symptoms, Her role in Co-founding The Oklahoma Rare Coalition and the Malan Syndrome's Advocacy board which also deals with Arterial Tortuosity Syndrome (ATS). The impact that Malan Syndrome has had on her family, resources and More. You can visit the Malan Syndrome Foundation Website by going to https://www.malansyndrome.org/ If you would like to donate to this podcast you can go to https://www.buzzsprout.com/2204433/support Please consider subscribing to Rare Chef here on YouTube. Feel free to comment below.
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1. [Ad] High Street Matters: Accessibility - Unlocking the High Street (00:11:36)
2. (Cont.) Rare Connection Episode 9: Malan Syndrome with sky from Oklahoma (00:11:37)
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