Every February 28 -or 29 in leap years- World Rare Disease Day is celebrated with numerous activities and initiatives organized around the world in order to give this community a voice. And to support the need to raise awareness about rare diseases, their challenges and needs and to claim equality, the Conquistando Escalones Association has created a video starring the president of the entity, Abrahán Guirao, affected by Limb-girdle Muscular Dystrophy 1F/ D2.
The recording shows some intimate and personal facets of Guirao, such as when he goes to the bathroom or his party nights, but also includes part of the work he does as the entity’s highest representative with meetings to carry out new actions that help spread the word. that they carry out to promote medical research into the disease they suffer from. “With this action we want to give visibility to our disease, but also to normalize the daily life of a person with a rare disease,” argues Guirao. And it is that, already in the book «El torneo de su vida»,, he sent a message without heroism or paternalism and in this 28-F the line has been followed.
Likewise, with this action we join the global motto of this day where “Equity” is emphasized because everyone deserves fair opportunities and access to health care. To illuminate our causes with your solidarity, you can help us in the way that is easiest for you. We tell you all the options HERE.