From HAE Panama

During the month of May, the Panamanian Association of Hereditary Angioedema Patients carried out various awareness and visibility activities.

  • We began by creating an Instagram campaign and sharing important information and graphics about HAE on Instagram.
  • On May 7, the association’s board of directors and other patients met with representatives from the pharmaceutical company that represents the generic drug icatibant in Panama. They learned about the general information about this medication.
  • On Saturday, May 10, the group of patients met at the Panama Canal administration building to have the building illuminated in the colors of HAE Month. There, they distributed flyers to passersby with information about hereditary angioedema, attacks, symptoms, and where to seek help.
  • On May 16, they had a meeting with the head of the emergency department at the Children’s Hospital. They were accompanied by the state coordinator of rare diseases, Dr Johnny Cuevas. The purpose of the meeting was to verify the availability of medications for pediatric patients and to coordinate training for medical staff on the use of HAE medications.
  • Finally, they concluded this month’s awareness-raising event on May 16 with a training session for medical and nursing students at the International University of Panama. This session focused on the general aspects of HAE, led by Dr Olga Melcina Barrera. Dr Johnny Cuevas, the state coordinator of rare diseases, addressed the topic of rare diseases and explained the program run by the Ministry of Health. He also explained how HAE is being managed in the country. The topic of HAE was also addressed from a psychological perspective. This topic was addressed by the psychologist from the Ministry of Health’s rare disease program. This session featured testimony from two HAE patients, Aleyda Milord and Michelle Coronado. Other patients who are members of the association also attended. It’s worth noting that the students were very interested, asked questions, and the auditorium was at capacity. In addition, various buildings at institutions across the country were illuminated during hae day :-).