From Caroll and Andry Batista, HAE Dominican Republic

FUNDAEHER Is Born and Legislation for Rare Diseases Advances
This year, 2025, has been a significant one in the fight for the rights and care of people living with HAE in the Dominican Republic.

For the first time, after some meetings with HAEi’s Regional Patient Advocate, Javier Santana, and his advice, the founding members of FUNDAEHER (Dominican Foundation for Hereditary Angioedema) met in person with several patients we’ve been in touch with for some time. This gathering marked a hopeful milestone in building a more united, informed, and empowered community.

One of the biggest breakthroughs this year was the addition of an allergist with HAE experience to our mission as a medical collaborator. This step brings us closer to providing more specialized and compassionate care tailored to the real needs of HAE patients.

At the same time, we’ve been actively following a bill introduced in the National Congress that aims to create a legal framework for the comprehensive care of people with rare diseases — including HAE, which remains underrepresented. This legislative proposal offers real hope for better access to specialized services, early diagnoses, and timely treatments for a historically invisible population.

Finally, we expect that before the end of the year, FUNDAEHER will gain official legal status as a foundation, establishing a formal structure to support those who need it most.