From Carlos J Carvajalino M, HAE Colombia
In the middle of the Cundiboyacense plateau, a vast Andean plateau located in the Eastern Cordillera of the Colombian Andes, the municipality of Toca became a meeting point for knowledge, community, and hope on August 16. The association for HAE in Colombia (AEHCO) came to this rural community to raise awareness about a hidden but profoundly human condition: hereditary angioedema (HAE). The event was the result of weeks of coordination with the Toca Municipal Government, in a joint effort to open spaces for dialogue about health, rights, and visibility in areas where information is still scarce.
Before: Listening, Understanding, and Preparing the Ground
Preparation for the meeting began with identifying local needs and seeking institutional partners. AEHCO conducted a preliminary review of health conditions in the municipality, detecting barriers to accessing specialized services, underreporting of rare diseases, and a lack of awareness of care pathways. These findings guided the design of an educational presentation tailored to the rural population, focusing on early recognition of HAE and the importance of its differential diagnosis compared to other common conditions. The goal was simple but crucial: to open conversation and generate interest where there had previously been only silence.
During: Sharing Knowledge and Awareness
The event took place at the House of Culture, with the presence of the mayor, community representatives, and families who came to learn about this rare disease. The opening was marked by a message of unity: the recognition that rare diseases are also part of public health and deserve attention. AEHCO offered an interactive presentation on HAE, using clear language and everyday examples that facilitated understanding. The session addressed symptoms, possible triggers, management approaches, and the importance of mental health in the process of adapting to the diagnosis. Although time did not allow for the practical workshop on crisis management, the conversation generated a collective reflection on the need to strengthen medical and community education to detect potential cases early.
Afterward: A network that begins to grow
As a result of the session, AEHCO appointed Martha, a local leader recognized for her social commitment, as an AEH community ambassador. Her role will be to serve as a liaison between the association and the municipality’s rural communities, facilitating early symptom detection and supporting new families seeking guidance. This connection represents a fundamental step toward the sustainability of fieldwork and the remote follow-up of potential patients. In the following months, AEHCO will continue to provide technical and emotional support through virtual meetings and low-cost educational materials.
A gesture that leaves a mark
The visit to Toca confirmed an essential truth: change begins when information is delivered with empathy. A few days later, AEHCO commemorated the day on its social media with a message that encapsulates its spirit: “Toca welcomed us with open doors and an open heart… we built a community, sowed knowledge, and continued to strengthen a network that is built step by step, person by person, where every gesture counts.” This phrase summarizes the purpose of each outing: to transform ignorance into awareness and distance into collaboration. In Toca, Boyacá, a community opened its hearts, and AEHCO built a bridge of trust so that no one living with HAE ever feels invisible again.
Looking Ahead
With this experience, AEHCO reaffirms its commitment to continue traveling through the country’s rural areas, supporting the communities most in need, and building knowledge from the ground up. Toca, Boyacá, thus becomes a symbolic starting point for strengthening early detection of HAE and consolidating local support networks. Every encounter, every story, and every conversation confirms that health education is also a form of social justice: an opportunity for medical knowledge and human empathy to work together toward a more informed, supportive, and visible future for people living with rare diseases in Colombia.
