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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 six languages.  The video aims to raise awareness about Cerebral Creatine Deficiency Syndromes (CCDS).

CCDS are three genetic diseases that have problems with making or transporting creatine into the brain.  All are underdiagnosed and two of the three CCDSs are treatable.

Learn about the signs and symptoms and how specific urine and plasma tests can help detect these rare pediatric neurodevelopmental disorders.

Watch the video and spread the word about CCDS!

Please visit our Rare Disease Day Video Channel to see our “Screen Creatine NOW” videos in the following languages:

  • English
  • French
  • Dutch
  • Italian
  • Spanish
  • Portuguese
  • Japanese

We would be delighted to make additional language versions so that more people around the globe can be aware of CCDS. Get in touch with us if you would like to help!

Many thanks to these groups who work tirelessly to help the CCDS communities around the world!