Associação Brasileira Addisoniana (ABA)
Associação Brasileira Addisoniana (ABA), in collaboration with Brazil’s nationwide CAH community and reference hospitals across all 27 federative units, is implementing a capacity-building initiative designed to strengthen education, improve emergency preparedness, and expand access to life-saving treatment for individuals living with Congenital Adrenal Hyperplasia (CAH). With thousands of children and adults affected by CAH and adrenal insufficiency across the country, the project addresses long-standing challenges in access to essential medicines, emergency care, and clear, family-friendly information.
This initiative supports efforts to ensure that families, especially those in vulnerable socioeconomic circumstances, can reliably access emergency hydrocortisone injections and receive timely and accurate guidance on managing adrenal crises. By improving coordination between ABA, reference hospitals, health professionals, and caregivers, the project aims to build a more equitable and informed system of support for CAH care in Brazil.
A core component of the project is the development and dissemination of accessible educational tools, including three instructional videos that demonstrate emergency hydrocortisone administration and highlight the importance of emergency kits, along with a step-by-step injection leaflet that has undergone medical review. These materials will be paired with laminated QR coded resources to reach families and healthcare teams efficiently, which reduces reliance on large scale printing and maximizes national reach.
Key activities include assembling and distributing 27 model emergency kits to university hospitals in every state, strengthening the knowledge of health workers on adrenal crisis management, and integrating ABA’s support network into hospital pathways so newly diagnosed patients and their families are quickly connected to guidance, emergency kits, and peer support. In addition, vulnerable families across the country will continue receiving subsidized emergency kits that contain age appropriate supplies to stabilize an adrenal crisis until hospital care is reached.
The CAH community in Brazil faces several systemic barriers, including the lack of commercially available emergency hydrocortisone kits, unequal access to neonatal screening, inconsistent availability of essential medicines, and limited awareness of adrenal crisis protocols among emergency room personnel. This project addresses these gaps by providing structured educational resources, expanding ABA’s presence in hospitals, and promoting standardized and evidence based emergency care practices across the country.
Through coordinated efforts with health professionals, hospitals, caregivers, and volunteers who live with CAH, this initiative will strengthen national awareness, empower families with knowledge, and enhance the safety and autonomy of patients. The overall goal is to reduce preventable adrenal crisis deaths, improve long term health outcomes, and support a sustainable and well connected CAH community throughout Brazil.
This initiative supports efforts to ensure that families, especially those in vulnerable socioeconomic circumstances, can reliably access emergency hydrocortisone injections and receive timely and accurate guidance on managing adrenal crises. By improving coordination between ABA, reference hospitals, health professionals, and caregivers, the project aims to build a more equitable and informed system of support for CAH care in Brazil.
A core component of the project is the development and dissemination of accessible educational tools, including three instructional videos that demonstrate emergency hydrocortisone administration and highlight the importance of emergency kits, along with a step-by-step injection leaflet that has undergone medical review. These materials will be paired with laminated QR coded resources to reach families and healthcare teams efficiently, which reduces reliance on large scale printing and maximizes national reach.
Key activities include assembling and distributing 27 model emergency kits to university hospitals in every state, strengthening the knowledge of health workers on adrenal crisis management, and integrating ABA’s support network into hospital pathways so newly diagnosed patients and their families are quickly connected to guidance, emergency kits, and peer support. In addition, vulnerable families across the country will continue receiving subsidized emergency kits that contain age appropriate supplies to stabilize an adrenal crisis until hospital care is reached.
The CAH community in Brazil faces several systemic barriers, including the lack of commercially available emergency hydrocortisone kits, unequal access to neonatal screening, inconsistent availability of essential medicines, and limited awareness of adrenal crisis protocols among emergency room personnel. This project addresses these gaps by providing structured educational resources, expanding ABA’s presence in hospitals, and promoting standardized and evidence based emergency care practices across the country.
Through coordinated efforts with health professionals, hospitals, caregivers, and volunteers who live with CAH, this initiative will strengthen national awareness, empower families with knowledge, and enhance the safety and autonomy of patients. The overall goal is to reduce preventable adrenal crisis deaths, improve long term health outcomes, and support a sustainable and well connected CAH community throughout Brazil.