VACTERL Visionaries is a new UK-based resource created by adults living with VACTERL Association, for adults living with VACTERL Association (a nonrandom group of congenital birth defects that often occur together; Vertebral defects, Anorectal malformations, Cardiac defects, Tracheo-Esophageal fistula, Renal anomalies, and Limb abnormalities).
Developed through collaboration, shared experiences, and a commitment to improving support for the adult VACTERL community, the website provides a dedicated space where individuals, no matter where they live, can find information, connection, and understanding.
For many adults living with VACTERL, support and information can become more limited after childhood, often leading to feelings of isolation and uncertainty when navigating the ongoing challenges associated with this rare and complex condition. Through honest conversations with others who understand these experiences first-hand, the website creators recognised the need for a resource specifically designed to support adults throughout their lives.
VACTERL Visionaries brings together lived experiences, practical information, personal stories, resources, advocacy, and signposting to support services. The website aims to support adults living with all aspects of VACTERL Association, as well as their families, carers, healthcare professionals, researchers, and supporters who wish to better understand the long-term impact of the condition.
At its heart, VACTERL Visionaries is about building community. By sharing experiences and amplifying the voices of adults living with VACTERL, the creators hope to reduce isolation, foster connection, and raise awareness of the lifelong realities of this rare condition.
Their vision is simple: that no adult living with VACTERL feels alone. They want individuals to know that their experiences matter, their voices are valued, and that there is a growing community committed to supporting one another, advocating for greater awareness, and improving understanding of life with VACTERL.
