The event scheduled for 1 March aims to raise awareness of KAT6A syndrome.

Lagos-based charity KAT6A is organising a walk on March 1 to mark Rare Disease Day and raise awareness for KAT6A syndrome. Also known as Arboleda-Tham Syndrome (ARTHS), this rare disorder results from a mutation in the KAT6A gene.

Currently, approximately 500 cases of KAT6A have been diagnosed globally, including five in Portugal.

The KAT6A association in Lagos aims to support children with this mutation, raise disease awareness, and promote biomedical research.

The walk it is organising is scheduled for Saturday, March 1, even though Rare Disease Day is observed on February 28 this year.

Rare Disease Day is held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The date is chosen because it falls on February 29, the rarest date in leap years.

On March 1, participants will gather at 15h15 at Praia da Batata by the statue of São Gonçalo, by the “chão queimado.” The walk is scheduled to start at 15h30.

Basic registration costs €2. Those who wish to purchase a charity T-shirt will be charged an additional €8, for a total of €10.

To register and order a t-shirt, contact the association via email: kat6aportugal@gmail.com