Ivemark Syndrome: Yesterday and Today

Biörn Ivemark is credited with the discovery of Ivemark Syndrome in 1955. According to the National Organisation for Rare Disorders, Ivemark Syndrome is comprised of: 1) an absent or underdeveloped spleen, 2) cardiovascular anomalies and 3) abnormal placement of the organs in the chest
and or abdomen. Julia Mayfield is an adult born with this rare genetic condition called Ivemark Syndrome.

Julia is joined on this episode of "Heart to Heart with Anna" by Biörn Ivemark's grandson, Richard Ivemark. Growing up, Richard’s family sometimes spoke of Ivemark Syndrome, but
nobody fully understood what it was. After the passing of his grandfather in 2005, Richard was unable to get a complete picture of the disorder. So, in 2019 at the age of 18, he decided to write a paper on Ivemark Syndrome to understand his grandfather’s legacy. In doing so, he found the small, yet welcoming, Ivemark Syndrome community online trying to raise awareness about this rare disorder.

Julia and Richard share what they've learned about Ivemark Syndrome with Anna, as well as, their hopes for the future of the label "Ivemark Syndrome." Julia also gives some advice for others looking to get information about rare diseases.

Links to Programs and Organizations Mentioned in this Podcast:

Julie's other "Heart to Heart with Anna" episode

Julie and Richard's Ivemark Syndrome Support Group

NORD - National Organization for Rare Disorders

RaDaR - Rare Disease Registry Program

GARD - Genetic and Rare Disease Information Center

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