From Regional Patient Advocate Javier Santana
I have held discussions with a pharma company from Costa Rica who wishes to introduce a generic HAE treatment to Costa Rica, Guatemala, and Peru. The company is currently engaged in discussions with doctors in these countries.
A European citizen will be temporarily relocating to El Salvador to participate in a student internship, and her parent inquired about available treatment and physician referral. The patient was directed to a knowledgeable physician in the country.
I am continuing to provide support to the member organizations and HAE patients in Guatemala, Panama, El Salvador, and the Dominican Republic through HAE International programs and services, and by helping to identify and refer more HAE patients.
It was exciting to see the patients in Panama getting involved in Rare Disease Day activities. Members of HAE Panama generated HAE awareness and educated the public by participating in media interviews to discuss the disease and joined in on special rare disease events along with 11 other rare disease groups. Events included sharing video testimonials for social media, joining in a human chain in front of key local buildings, and helping to coordinate the lighting of government buildings in rare disease day colors.
The first National Forum of Rare Diseases in Costa Rica was held on 29 February 2020. Doctors, as well as patients with rare diseases, participated in the event.