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What is RVCL?
RVCL is a rare genetic disease. Despite it's rarity, RVCL has affected our family for at least 4 generations. Only 200 people worldwide have been diagnosed. In patients with RVCL the small blood vessels in the body systematically shut down. Typically, within 5-10 years of the onset of symptoms of RVCL, patients die. Sisters, Fran and Laura were both diagnosed 3 years ago. Fran was fortunate to have seen a NY doctor, one of the very few familiar with the disease. He directed her to Washington University. RVCL was first identified in the late 1980's by Dr. Atkinson, a Rheumatologist and Dr. Grand, an Ophthalmologist at Washington University. Recently, Dr. Miner, formerly at Washington University, set up a research lab at The University of Pennsylvania to study the disease.