News and Press Releases

Newly Revised Professional Healthcare Brochure

The Barth Syndrome Foundation (BSF) has revised an informative brochure about Barth syndrome, written by people at BSF and reviewed by the clinical members of our international Scientific and Medical Advisory Board (SMAB). It provides a good overview of this complicated syndrome from a number of angles. One important section lists a summary of some of the unusual clinical complexities that can arise (sometimes very quickly) as a result of the multi-system nature of this disorder.

These two pages (pgs. 4-5) can be particularly useful for treating physicians and for patients during first visits with new doctors. Additionally, it can be vitally important in an Emergency Room when a physician unfamiliar with Barth syndrome is suddenly asked to care for a patient with the disorder. There is also a section highlighting published journal articles that detail much of the current clinical knowledge about the syndrome (pgs. 8-11). The brochure can be downloaded from our "Quick Links" webpage. If anyone — family, physician, scientist or donor — would like some additional hard copies, please contact Lynda Sedefian at lynda.sedefian@barthsyndrome.org.

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