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The RareChildNeuro 75% Fact

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...Read More

Two new Vigilan sites open at Duke and Rush

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,...Read More

The Lumos Team supports CCDS Awareness Day!

The Lumos Team supports CCDS Awareness Day. Thank you Association for Creatine Deficiencies – ACD – for organizing this day!  Read More