SiEndo Fondación's First CAH Club Meeting in Colombia
Brief Description of Project
SiEndo is a Colombian NGO dedicated to improving the ives of children and youth with chronic but treatable endocrinological conditions by ensuring access to quality healthcare. With more than 20 years of experience, SiEndo addresses the diaparities in medical treatment access due to economic, geographical, educational, and systemic factors, impacting these children's quality of life.
SiEndo used their Community Development Grant to create a supportive community for those with Congenital Adrenal Hyperplasia (CAH) in Colombia, a group currently lacking a formal patient registry and sufficient statistical data. The NGO's first Club Meeting aims to identify the challenges faced by the CAH community and propose actionable soltuions to improve their quality of life through a Health Needs Assessment.
Objectives of the meeting include gathering demographic data, educating patients and families, fostering community formation, raising awareness of patients' rights, and promoting research and advocacy. The project intends to support financially burdened families and create a database to inform future healthcare planning and interventions. The meeting will also facilitate collaboration among stakeholders to enhance the overall healthcare system for CAH patients in Colombia.
Brief Description of Project
SiEndo is a Colombian NGO dedicated to improving the ives of children and youth with chronic but treatable endocrinological conditions by ensuring access to quality healthcare. With more than 20 years of experience, SiEndo addresses the diaparities in medical treatment access due to economic, geographical, educational, and systemic factors, impacting these children's quality of life.
SiEndo used their Community Development Grant to create a supportive community for those with Congenital Adrenal Hyperplasia (CAH) in Colombia, a group currently lacking a formal patient registry and sufficient statistical data. The NGO's first Club Meeting aims to identify the challenges faced by the CAH community and propose actionable soltuions to improve their quality of life through a Health Needs Assessment.
Objectives of the meeting include gathering demographic data, educating patients and families, fostering community formation, raising awareness of patients' rights, and promoting research and advocacy. The project intends to support financially burdened families and create a database to inform future healthcare planning and interventions. The meeting will also facilitate collaboration among stakeholders to enhance the overall healthcare system for CAH patients in Colombia.
On 10 March 2024, SiEndo and La Cardio held Colombia's first CAH Club Meeting. More than 90 participants, 32 families, and 20 volunteers attended. Children learned about CAH and connected with new friends and their families. While children played and learned, parents received informational brochures about CAH, navigating the Colombian health system, and children's rights to life and health. The following topics were covered:
- What is CAH?
- How does it affect our lives?
- What is the path to a fulfilling life?
- What are the ways to achieve it?
This inaugural meeting was just the beginning of new opportunities for this Colombian community.
. View the following resources that resulted from the meeting:
View this video from Colombia's CAH Club Meeting
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In this video, a youth member of the Colombian CAH Community reflects on her experience participating in the country's first ever CAH Club Meeting
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CLAN Child Friendly Rights Flyer Translated to Spanish
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