Natural History Study...We need YOUR help!

Event Details

Natural History Study...We need YOUR help!

Time: June 27, 2011 at 6pm to September 1, 2011 at 7pm
Location: Everywhere
Event Type: study
Organized By: Mary Pruitt
Latest Activity: Jun 29, 2011

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Event Description

Synageva is currently studying the natural history of early onset (Wolman Disease) LAL Deficiency.  The information from this study is very important to the understanding of Wolman disease since it is so rare and there is no information summarized from large groups of patients available in the literature.  If you are interested in having your child’s data included in this study, please contact one of the active clinical study sites or the sponsor representative listed on http://clinicaltrials.gov/ct2/show/NCT01358370

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Comment by Mary Pruitt on June 27, 2011 at 12:21pm
My doctors were kind enough to do this study and send it to Synageva. Because this disease is so rare, they need every bit of information they can get!

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