Getting To Know Cornelia De Lange Syndrome, Rare Genetic Disorders

Patients with rare CdLS (ist) disease

JAKARTA - Cornelia de Lange Syndrome or CdLS in Indonesia is classified as a rare disease in Indonesia. CdLS is a rare disorder in genetics due to mutation during the fertilization process in the uterus.

There are 22 rare disorders that are owned by CdLS sufferers, which can affect between 1/10,000 to 1/60,000 births. In Indonesia itself, it is estimated that cases occur in every 1/30,000 births, which so far have recorded around 160 cases of CdLS sufferers.

A social action to raise public awareness and raise a sense of concern for children with CdLS, local brand activist Arto Biantoro who is back at the Extreme Impact. Xtreme Impact is an initiative program of the company he leads, Image Brand, to help others in extreme, creative and fun ways.

Arto Biantoro carried out a solo cycling action. This social action he did was pedaling a bicycle from Jakarta and ending up in Semarang City with the aim of socializing CdLS and raising funds for CdLS children who had been fighting alone, only with their families.

This Extreme Impact will be carried out on March 17-19, 2023. In several cities on the northern coast route visited by Cirebon and Pekalongan, Arto will conduct socialization related to CdLS.

Social action with solo recycling also invites all parties who care to cycle together. Or can distribute donations through Good Seeds. Later, all funds obtained will be channeled to the Cornelia de Lange Syndrome (CdLS) Indonesia Foundation located in Semarang City.