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New Hope for HIBM Cure

The Persian community rallies behind increasing awareness of a rare genetic disease.

URL: http://www.jewishjournal.com/health/article/new_hope_for_hibm_cure_20020426

Soroya Nazarian learned about hereditary inclusion body myopathy (HIBM), an uncommon muscular disorder that affects the Persian Jewish community, while in Israel on a Hadassah mission about five years ago. There, she met professor Zohar Argov, from the department of neurology at the Hebrew University-Hadassah Medical School in Jerusalem, the researcher who first discovered the rare disease in 1984. Although Nazarian did not know anyone personally affected with HIBM, the self-described "professional volunteer" knew her involvement with Hadassah Southern California put her in a unique position to increase awareness and raise funds for the condition that seemed to unfairly target her community.

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