Archive for the Event News Category

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

Lumos Pharma Celebrates Worldwide Rare Disease Day with “Screen Creatine NOW!” Video

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...Read More

ACD Exhibit Booth at ACMG

Austin, Texas – April 28, 2016 – ACD Exhibit Booth at ACMG The 2016 American College of Medical Genetics (ACMG) Conference was held in Tampa, Florida March 9-11. The ACD attended with an exhibit booth to help raise awareness of CCDS. The conference was well attended by geneticists from all over the world as well...Read More

Lumos joins Association for Creatine Deficiencies in Kyle for Local Rare Disease Day Event

AUSTIN, Texas – February 16, 2016 – In recognition of Rare Disease Day, members of the Lumos team will attending the local Rare Disease Day event, Cup of Hope, a chili cook-off, sponsored by U.R. Our Hope, in Kyle, Texas on Saturday, February 20th.   Also in attendance and hosting a booth, will be Whitnie Strauss, Vice...Read More