Community Development

Strengthening CAH and Other Childhood NCD Communities

Since 2004 CLAN (Caring & Living As Neighbours) has been collaborating with a broad range of stakeholders to drive change for CAH communities in lower-income countries. In line with CLAN’s Strategic Framework for Action and five pillars, quality of life for children diagnosed with CAH and other NCDs must be improved through a holistic, sustainable community development approach that addresses the bio-psycho-socio and cultural needs of families. Even for children diagnosed with NCDs in resource-poor settings who have access to medication, multiple other barriers to a quality of life on par with their neighbours in wealthier countries exist and must be redressed.

Families of children living with CAH have consistently asked for help with five things:

Affordable access to essential medicines and equipment
Education, research and advocacy
Optimal medical management
Strong family support groups
Freedom from poverty and financial independence

These five pillars are a starting point for action. Ongoing consultation with CAH Communities is required to ensure the needs and perspectives of children and families living with NCDs are informing changes within and to health systems, and thereby informing efforts to improve health outcomes and reduce the preventable mortality and morbidity currently associated with CAH.

Codesign of all efforts with CAH Communities will be a necessary component of achieving the highest quality of life for all. Empowered NCD communities benefit children and families as much as they do health professionals and health systems.

Zimbabwe's CAH Community Support Group

Zimbabwe initiated the very first CAH patient support group meeting in June 2022. They have shared that there has been a great impact on the children and families involved. First, there is regular dialogue through a CAH WhatsApp group in a local language... Read more

@MATES4Kids is an international movement committed to reducing the preventable mortality associated with Congenital Adrenal Hyperplasia (CAH). CLAN (Caring & Living As Neighbours) is the founding Secretariat of @MATES4Kids and this Activity Report captures key initiatives and achievements of the movement from January 2022 to June 2023.

Acknowledgement of Country. In the spirit of reconciliation, @MATES4Kids acknowledges the Traditional Custodians of Country throughout Australia and the connections of Aboriginal and Torres Strait Islander peoples to land, sea and community. In particular, we acknowledge the Wallumedegal Peoples of the Eora Nation, on whose land CLAN (Caring & Living As Neighbours) is headquartered. We pay our respect to Elders past and present and extend that respect to all First Nations leaders around the world.

Strengthening CAH and Other Childhood NCD Communities

Read more about our community development initiatives:

Zimbabwe's CAH Community Support Group