South America and Mexico
Fernanda Martins has served as HAEi’s Regional Patient Advocate for South America and Mexico since 2018. She has been an active member of the Brazilian HAE association since 2005. Fernanda is the daughter and sister of patients with HAE and, therefore, understands the overall burden associated with the condition. Fernanda has a degree in Biology and Nutrition and a master’s degree in public health. In addition to working at HAEi, Fernanda works as a “scientific advocate” in the Latin American food industry.
Contact Fernanda by email: gro.ieah@snitram.f
2023 Highlights and Hopes for 2024
In the December issue of Global Perspectives, each of our Regional Patient Advocates (RPAs) has selected a few of the most important moments and successes from the past year, as well as their hopes for 2024 for their region.
Here you have the highlights from Fernanda – and her hopes for 2024:
I hope, and I work for it, that every HAE patient in my region can have access to modern therapies and therefore can live life with no worries about HAE.
– Fernanda de Oliveira Martins
News from Global Perspectives 2023
Published in Global Perspectives, October 2023
From Regional Patient Advocate Fernanda De Oliveira Martins
I am working with many countries in my region to support them in implementing some of HAEi’s wonderful tools and services. Chile has recently launched a “web2go” website. This solution is a quick process, free, and helps Member Organizations be more visible, increasing HAE awareness. You can see their website here: https://aehchile.haei.org/
We expect that more patients, caregivers, and physicians can now find the Chilean HAE Member Organization more easily.
HAEi has run the Baseline Burden of Illness survey in Mexico. I have provided support throughout the process, including joining the presentation of the results to support with translations. The results are really helpful to have a better understanding of the impact of HAE in Mexican patients and an overview of the treatments in use in the country. The results can now be used to increase awareness of the disease and to show the importance of getting treatment. HAE Mexico plans to share the results at the Latin American Society for Immunodeficiencies (LASID) conference for healthcare professionals.
The HAE community in the region is very excited about the upcoming 2024 HAEi Regional Conference Americas in Panama next year. Over the past weeks, I have supported the Member Organization leaders with questions regarding the information for the travel grant process. Some Member Organizations, such as Bolivia, are new and have never participated in a regional or global HAE event. I’m delighted to be able to help and look forward to seeing representatives from Bolivia and all the countries in my region in Panama. We hope for a great meeting!
I continue to share important information via our region’s Instagram: https://www.instagram.com/haei_sudamerica_y_mexico/
It increases awareness of the disease and helps in disseminating the activities from the countries in the region. Follow us and stay up-to-date with the activities in our region.
Published in Global Perspectives, June 2023
From Regional Patient Advocate Fernanda De Oliveira Martins
First of all, I would like to welcome José Ignacio Contreras Silva as the leader of the new Member Organization in Chile. In Spanish, the name is Corporación Angioedema Hereditario Chile – globally known as HAE Chile. The new group is getting to know the HAEi tools and resources and will soon be able to implement a website as well as other support tools such as the Emergency Card. For more information, please visit the country page for Chile.
The Member Organizations in my region have been busy with events and activities in celebration of the global Rare Disease Day. Together, we are helping to raise awareness of HAE. Congratulations to all the Member Organizations in the region!
We are very proud to have eight participants from South America and Mexico among the 20 total young people participating in the LEAP program. They are the future of the HAE advocacy work, and we very much congratulate them for this achievement.
Furthermore, I would like to mention that the region has been represented at patient meetings of pharma companies such as Takeda and Pharvaris.
