Monthly Archives: January 2012

National MPS Society nominates MPS I to be considered for panel of recommended newborn screenings

The National MPS Society submitted the nomination form for MPS I to the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), for consideration of being added to …

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Become a member of the National MPS Society!

Have you renewed your membership with the National MPS Society?

Become a member to receive benefits and the latest news about the Society, fundraising events, research and more! Your membership brings us closer to achieving our goal of curing the debilitating diseases that affect our families and friends.

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The Painted Turtle is accepting applications for the Skeletal Dysplasia and MPS Summer Session

The Skeletal Dysplasia and MPS Summer Session at The Painted Turtle will be held June 15-20, 2012. Summer Camp provides an opportunity to share good times, and peer support with …

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Shire has announced that they will be initiating a Natural History study for MPS IIIB

Official Title: “An Observational Prospective Natural History Study of Patients With Mucopolysaccharidosis Type III (MPS IIIB, Sanfilippo Syndrome Type B)” The purpose of this study is to evaluate the natural course …

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New test spots early signs of inherited metabolic disorders

New test spots early signs of inherited metabolic disorders A team of scientists, led by researchers at the University of California, San Diego School of Medicine and Zacharon Pharmaceuticals, have …

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Ultragenyx Pharmaceutical Inc. announced it has in-licensed an enzyme replacement therapy program to treat MPS VII

Ultragenyx Pharmaceutical Inc., a biotechnology company focused on developing treatments for rare and ultra-rare genetic disorders, today announced it has in-licensed an enzyme replacement therapy program from St. Louis University …

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2012 National MPS Society Family Conference

The 2012 family conference was held July 26-28, 2012 in Boston with over 400 attendees, all of whom had fun being together plus sharing and hearing new information.

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