This video was recorded for the 10th anniversary of hae day :-) 

Tell us a little about yourself

I’m Fernanda, I’m Brazilian, and I live in São Paulo.

I have always been a curious person since I was little. I wanted to know everything about life and nature, that is why I decided to study biology. I also studied nutrition, and today I work in this area.

My mother and sister have hereditary angioedema, so I have seen the impact of this disease since I was very young.

Today I am the Regional Patient Advocate (RPA) for South America and Mexico.

Tell us a little about your region

South America is the southern subcontinent of the Americas. It includes twelve sovereign states: Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, Guyana, Paraguay, Peru, Suriname, Uruguay, and Venezuela. Mexico is a country in the southern portion of North America.

The continent’s cultural and ethnic outlook has its origin with the interaction of indigenous peoples with European conquerors and immigrants and, more locally, with African slaves. Given a long history of colonialism, the overwhelming majority of South Americans speak Portuguese or Spanish, and societies and states reflect Western traditions.

Latin America is the region with the highest levels of income inequality in the world, which brings many difficulties to the region.

In brief

• Region: South America and Mexico
• Number of countries: 13
• Number of MOs: 10

What are you most proud of being able to do for the countries in your region?

First of all, I am happy to be part of the HAE family. It is such an important group, with such a beautiful purpose, that it makes me proud.

I feel privileged to have the opportunity to help people with hereditary angioedema to organize themselves in groups, to develop activities, to learn and connect, and, above all, to build dreams.

I recently had the opportunity to help with the first HAE patient meeting in my region. I hope this is just the beginning of many other activities!

What changes have happened for people with HAE in your region whilst you have been an RPA?

Since I became the RPA for my region, we have seen; more country groups become involved; modern drugs approved; better communication among MO leaders, favoring the exchange of experiences, and more countries with a website hosted by HAEi. In addition, we had the first MO leaders meeting in 2019 and the first patient meeting in Latin America in 2021.

What next steps will you be taking as an RPA to support your region?

As the next steps, I want to support the MOs to be even more connected. I want them all online at HAEi.org and using HAEi Connect. I hope I can organize more events to spread knowledge on HAE and help connect people with HAE.