In Paraguay, we are currently registering more than 20 patients already diagnosed in the country, free of charge and thanks to a study project in which several families were able to access the diagnosis without having to travel to another country, as many have done previously to have access to the diagnosis.

We are also working from 2 areas: The public health system for the purchase of more appropriate and modern specific medications. This is possible through meetings with the Minister of Health in Paraguay, who referred us to a doctor in charge of strategies for rare diseases within the territory.

In the private area, we are looking at the possibility of an agreement with the Ministry of Health to speed up the procedures and to be able to centralize the care of these patients since it has the necessary infrastructure to detect more patients with specific diagnoses, professionals with knowledge of pathology and interested in continuing training to be able to respond. Currently, some patients have already been admitted, one of them in a severe condition, with 30 days of intensive care for glottis edema.

Paraguay’s participation in the 2024 HAEi Global Leadership Workshop, recently held in Copenhagen, Denmark, has been highly gratifying, as we bring new challenges and tools that we want to continue working on as a group of patients and caregivers. We would like to emphasize the gratitude of all of us to the international organization for this opportunity.

With the commitment to continue moving forward, overcoming the difficulties of being a small country, but valuing each person whose life represents a family, a father, a mother of a family, a son/daughter, or a loved one within a home, we will not stop insisting on obtaining a medicine that in these times represents the quality of life for each one.

Hoping to always contribute in the best way possible, I say goodbye and remain available for what we can contribute as representative members of our country.