By Carol A. Dutch – Senior Director, Patient Engagement, Lumos Pharma Thanks to the human genome project, thousands of diseases and disorders have been identified and most of these can be characterized as rare and inherited. Facts like “There are over 7000 rare diseases identified” and “There are more than 350 million people in the world living with […]

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The Vigilan Study – Observational Study of Creatine Transporter Deficiency (CTD) of Males, now has seven study sites open for patient enrollment. The newest 3 sites to join the Vigilan Study are: University of California San Diego La Jolla, California, United States 92037 Investigator: Bruce Barshop, MD, PhD Study Coordinator: David Ashley   Boston Children’s […]

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Duke University Medical Center in Durham, North Carolina and Rush University Medical Center in Chicago, Illinois are now recruiting individuals to participate in a two-year prospective observational study of males with Creatine Transporter Deficiency (CTD), named the Vigilan Study. Dwight Koerberl, MD, PhD is the principal investigator (PI) at Duke University, and Elizabeth Berry-Kravis, MD, […]

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Austin, Texas – March 15, 2017 ScreenCreatine Project: Disease awareness website launched to expand understanding and resources associated with Cerebral Creatine Deficiency Syndromes (CCDS) including Creatine Transporter Deficiency (CTD) Today, Lumos Pharma launches the disease awareness website ScreenCreatine.org, part of the ScreenCreatine Project.  ScreenCreatine.org was developed to provide health literate information about the three creatine […]

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One in ten individuals are living with a rare disease.   On the last day of February every year, hundreds of patient organizations from more than 80 countries conduct awareness-raising activities to celebrate Rare Disease Day. In honor of the 10th annual Rare Disease Day, Lumos Pharma has created the below video “Screen Creatine NOW!” in […]

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