Establishing a Support Group & Upscaling the Knowledge and Awareness of Congenital Adrenal Hyperplasia among Families in Sri Lanka


​Two CAH groups in Sri Lanka are joining forces to enhance support for CAH communities. They will collaborate while working on separate projects to maximize impact. 

Brief Description of Projects

Support Group:

The first project focuses on establishing a support group in response to the compounded stresses from the COVID-19 pandemic and the economic crisis in Sri Lanka, which have added to the complex medical and psychosocial issues faced by individuals with CAH. This community has been dealing with high rates of unexplained early deaths due to a lack of newborn screening, high consanguinity, gender misidentification, and limited access to education and healthcare. A newly established center at the Faculty of Medicine, University of Colombo, aims to improve clinical care, education, research, community awareness, and support for CAH and other rare endocrine disorders. The center works with The Asia Foundation to create legal pathways for amending incorrect gender records on birth certificates and collaborates with CLAN to ensure a continuous supply of essential medications. The support group will provide a forum for families to voice concerns, gain better access to educational resources, and receive centralized specialized services.

Booklet: 

The second project involves creating an educational booklet to address the lack of CAH-specific educational materials in Sri Lanka's native languages. At Lady Ridgeway Hospital, which treats 40-50 CAH patients, there is a significant need for patient education, as current resources are inadequate, and the terminology for CAH is not widely understood. Most CAH patients travel long distances for medical care, and the hospital lacks sufficient allied health support for patient education. The booklet will provide essential information on CAH, its complications, and management in simplified Sinhala and Tamil, aiming to improve knowledge, adherence to therapy, and prevention of complications.

These initiatives aim to address significant challenges such as the availability and affordability of medications, limited resources, lack of patient knowledge and support groups, and reduced access to comprehensive care. By establishing a support group and distributing educational booklets, the projects will enhance access to resources, advocacy, and specialized services, and empower the CAH community to better manage their condition and improve their quality of life.
The Sri Lankan team has made progress towards their projects. View the Sinhala and Tamil versions of the CAH booklet below!
Watch this video to learn more about the booklet!