From HAE Guatemala

Achievements and progress in Guatemala from January to April 2026

  • During the first three months of the year in Guatemala, we focused on organizing and increasing participation within the group, which already includes various roles: patients, physicians, and caregivers.
  • We held monthly virtual meetings with our HAEi RPA, Javier Santana, to monitor our work plan, set goals, and discuss new short- and long-term assignments.
  • In February, we participated in the presentation of the book “Let’s Imagine That” by the Guatemalan Dental Society, which explores scenarios related to rare diseases in Guatemala. The event brought together professionals and academics from the Ministry of Education’s North, Central, and Western branches, as well as teachers from various schools. The main objective was to raise awareness among teachers so that, from an early age, they can identify behaviors that could be associated with rare diseases. During the event, we were able to share relevant information about HAE.
  • As part of our efforts, we have sent communications requesting meetings with members of Congress and raising awareness about Hereditary Angioedema (HAE) among those serving on the Committee on Prevention and Social Security, who are focused on approving Initiative #6451, which aims to pass the Comprehensive Care Law for patients with rare, difficult-to-diagnose, and/or genetically based diseases.
  • We created a new profile for the HAE group of Guatemala on social media platforms Instagram and Facebook, as these platforms offer a crucial reach, allowing us to connect with thousands of people quickly. This also led to the creation of a new logo that identifies us as a country.
  • We published an article in the online newspaper www.agenciaocote.com titled: “Hereditary Angioedema (HAE), an invisible disease in Guatemala.” This article was written by Dr. Emilia Morales (an HAE patient and caregiver) with the assistance of our HAEi RPA, Javier Santana, and was distributed through social media by both the newspaper and ourselves as a patient group.
  • Emilia Morales, a patient, along with Javier Santana, HAEi’s Regional Patient Advocate, held a meeting with four newly identified immunologists from the Roosevelt Hospital in the country who possess expertise in HAE. The meeting focused on the support of physicians in the treatment and care of HAE patients in Guatemala, the new “LAW ON COMPREHENSIVE CARE FOR PATIENTS WITH RARE, DIFFICULT-TO-DIAGNOSE AND/OR GENETIC DISEASES”, as well as the creation of HAE training conferences in Guatemala, discussions about the disease within Guatemalan government agencies, the introduction of modern treatments to address HAE attacks in patients, and the first medical conference about HAE in Guatemala.

Future Plans for 2026

  • Continue seeking greater official communication with the Congress of the Republic of Guatemala to secure the approval of legislation aimed at improving the quality of life for HAE patients in the country.
  • With the arrival of new immunologists specializing in HAE in Guatemala, collaborate to garner greater attention from health authorities and ensure more physicians receive training on the disease.
  • Increase media coverage in newspapers and on social media to reach more patients in the country.
  • Presentation of the new official HAE Association
  • Creation of a new website for Guatemala.

Plans for the hae day :-) 2026 event

Walk as part of the “Steps and Pedals” program in Guatemala City, an initiative of the Guatemala City government that promotes physical activity and family time. The walk will raise awareness of HAEi and encourage participants to wear the representative color of this special day.

2026 Global Angioedema Leadership Conference in Madrid 2026

Participating in the 2026 Global Angioedema Leadership Conference in Madrid allowed us to learn more about the organization’s global support network, to know that patients are not alone, and that there is a whole ethical and governance structure that supports the pursuit of well-being and scientific advancements in treating the disease.

It also allowed us to learn about applications, activities, websites, and, most importantly, to interact with other people to establish communication and support networks, knowing that we are part of a community.

We found it to be an activity with high standards of quality and logistics, which makes us think that we should focus enthusiastically on finding the path that will allow us to access medication and treatments for patients with HAE.

In the scientific area, alternative medications were presented that could be used in countries that do not have access to HAE medications. In Guatemala, there is the possibility of using Tranexamic Acid as a short-term prophylaxis alternative and sometimes as a rescue medication along with fresh frozen plasma. We had the opportunity to interact with doctors, caregivers, and patients from different parts of the world who inspired us and shared their experiences and struggles in their countries to gain access to medications, which has not been easy, and which they have finally achieved after several years. They shared the strategies that were instrumental in getting their countries included on the list of countries with patients with hypertrophic cardiomyopathy (HCM) and access to medications, strategies that we, as a group, hope to implement.

We are on the right track and will continue our efforts until we achieve it!