AZ runs a neurofibromatosis disease awareness campaign

Held an in-company event to celebrate world neurofibromatosis awareness day

Improving access to treatment for rare diseases with the only treatment, Koselugo

AstraZeneca Korea announced on the 18th that it had conducted the 'Twinkling a Light for NF-1 Campaign' for its executives and employees to support domestic neurofibromatosis patients in celebration of 'World Neurofibromatosis Awareness Day'.

 

The Children's Cancer Foundation designated May 17 every year as World Neurofibromatosis Awareness Day to raise social interest in neurofibromatosis.

 

Worldwide, various activities are conducted every year to increase treatment access for patients with neurofibromatosis and support their overcoming disease.

 

AstraZeneca Korea held in-house lectures, disease infographic exhibitions, etc.

 

to better understand pediatric patients with neurofibromatosis in Korea, and executives and employees carried out a campaign to deliver messages of hope and commitment to improve the domestic treatment environment.

 

Neurofibromatosis is a rare disease that causes developmental abnormalities in the nervous system, bones, and skin due to genetic mutations.

 

The cafe-au-lait-spot is characteristic, and axillary/inguinal spots and Leish nodules, which are small hamartomas, appear on the iris.

 

Accurate clinical diagnosis of neurofibromatosis type 1 can usually be made before the age of 10, and symptoms tend to intensify with age.

 

About 20 to 50% of patients with type 1 neurofibromatosis experience plexiform neurofibroma, which can occur anywhere in the body except for the brain and spinal cord.

 

Depending on where it occurs, it causes pain as well as various body deformities or damage to vision, hearing, and cognitive abilities.

 

Surgical resection was the only fundamental treatment for neurofibromatosis.

 

In the case of plexiform neurofibroma, it appears in various irregular shapes and is difficult to completely remove, leaving the risk of tumor recurrence even after surgery.

 

AstraZeneca Korea received approval for Koselugo, the first type 1 neurofibromatosis treatment in Korea, in May 2021.

 

Koselugo, the only treatment for neurofibromatosis type 1 to date, reduced the tumor size by more than 20% in 68% (34 out of 50) of patients administered in global clinical studies, and among them, 82% (28 patients) showed a response of more than 12 months.

 

showed lasting results.

 

Cheol-Woong Kim, Executive Director of AstraZeneca Korea's Rare Disease Division, said, "Through the Neurofibromatosis Awareness Day event, it was an opportunity to properly understand neurofibromatosis disease and think about what AstraZeneca Korea executives and employees can do for patients." said.