From Rosa Maria Perez González, HAE Cuba

During this first period of 2026, we focused on preparing our participation in the 2026 Global Angioedema Leadership Conference, which was held in Madrid from March 26 to 29. In this regard, our delegation—comprised of patients, caregivers, and physicians—worked on the creation and understanding of the poster on case studies, as well as learning about the current situation in all provinces of the country.

We have strengthened our WhatsApp group, in which we share information and scientific literature.

In February, the AEDAF Drawing Stories YouTube channel published “The Life Story of a Patient from Cuba,” which was very well received within our organization.

We held meetings with our RPA, Javier Santana, and specialist physicians from our country so they could learn about the work of the international organization HAEi and the work they do with us as a patient group in Cuba. These meetings helped ensure that a medical delegation from our country participated in the Conference held in Madrid, Spain.

In April, we made some important progress in using the HAEi networks, such as updating our Member Organization’s information on the International Association’s official website and gaining access to the HAEi Connect platform, which is helping us organize information from our members.

Since March, we have been interacting on the HAE Companion app’s new hae day :-) section of the app, showcasing our members’ activities in honor of hae day :-), and HAEi Advocacy Academy, where we have completed several courses.

Finally, we are developing a short plan of activities for hae day :-):

  • April 19th: Dissemination in the WhatsApp group of Cuban patients with HAE, of the activities to be carried out in commemoration of hae day :-), on May 16th.
  • April 20th: Publication of articles on the current situation in Cuba, regarding patients with HAE, on the official social media pages of the Institute of Hematology and Immunology and the Cira García Central Clinic, both institutions of the Ministry of Public Health of the Republic of Cuba.
  • April 29th: A joint event commemorating International Immunology Day and Hereditary Angioedema Day was held at the Institute of Hematology and Immunology, where Drs. Odalys Orraca Castillo and Yaxsunaris Pérez Fumero presented case studies and a nationwide sectoral project on the situation of patients, crisis management, and diagnostic projections for new cases.
  • May 5th: Promotion on the official social media pages of the Institute of Hematology and Immunology and the Cira García Central Clinic of a YouTube video about a patient’s life story, accompanied by a brief written description and the link.
  • May 15th: Participation of doctors and patients in a radio and television program to raise awareness of the disease and seek support from the highest health authorities in the country.
  • Throughout April and until May 16th: Incorporation of individual and collective awareness activities in the new hae day :-) section in the HAE Companion app.

Future plans for 2026

In the coming months, we plan to have physicians and patients participate in radio and television programs in the country to raise awareness about the disease throughout the island.

We plan to implement the emergency card for all patients and approve and publish the treatment guidelines.

We will have three patients and one physician present at the 2026 HAEi Regional Conference Americas in Canada, with the possibility of including others. This will allow us to continue strengthening exchange opportunities with other member organizations and gain experience for future work.

2026 Global Angioedema Leadership Conference

The opinion of the four members of the Cuban delegation to the 2026 Global Angioedema Leadership Conference, held in Madrid, is overwhelmingly positive. The meeting was excellently organized in every aspect, from arrival at the airport and registration at the Conference Center to the scientific track, the leadership track for Member Organizations, and the networking opportunities and closing dinner. The sessions were extremely informative, enriching the scientific and organizational knowledge of the participating countries. We would like to express our special appreciation for the afternoon session on the second day (Saturday afternoon), which facilitated regional connections, in our case, Central America and the Caribbean. This fostered greater empathy among geographically close countries with patients facing similar challenges in accessing diagnosis and treatment. It was also gratifying to join the other countries in the South America and Mexico region and participate with them in an interactive space of excellent quality.

The depth of the scientific work, along with the extensive presence of the pharmaceutical industry through its sponsors, fostered a sense of empathy among patients. In this way, HAEi demonstrates once again its growing commitment to improving the quality of life for everyone living with this disease, regardless of where they are in the world.