Our History - Recognising a need
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Invisible Burden of Rare Conditions
We realise, that while much of the focus is often on paediatric care, from newborn screening through to childhood and adolescence, adults with VACTERL face a very different journey.
Adults with VACTERL encounter unique medical, social, and emotional challenges, yet their voices are frequently overlooked.
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Our aim in creating this space is to start bridging the gaps we found. To provide guidance, support, and information specifically tailored to the adult experience.
Our Journey
Katrina and Alan met in 2022 while volunteering for the TOFS charity and soon found a connection through their lifelong experiences with rare congenital anomalies under the VACTERL diagnosis.
Both had spent decades navigating the medical, social, and personal challenges that come with these complex conditions, from multiple surgeries to adapting in a world often unaware of their needs.
They discovered many similarities in their life journeys and discussed a common heartfelt vision.
To create a supportive space where adults with VACTERL related anomalies could connect and exchange experiences.
Where adults could offer mutual encouragement and raise awareness of the broad and often misunderstood spectrum of conditions under the VACTERL "umbrella."
The inspiration for VACTERL Visionaries took shape after meeting other adults involved in anomaly-focused groups. Once again, their stories mirrored one another’s, and a strong sense of kinship began to grow.
Recognising shared experiences of isolation, resilience, and determination, they realised the importance of creating a space specifically for adults with VACTERL.
This connection led to co-writing an article for TOFS Magazine, “Chew,” and producing a flyer for ERN eUROGEN "Recognising Common Needs in Uncommon Conditions" to help raise awareness and strengthen community links.
Three of our members presented at the VACTERL Association Family Event in Birmingham. Their presentation, “A Journey from Isolation to Empowerment,” shared their personal stories, their journeys with VACTERL, and highlighted the importance of connection and community (A YouTube link to the video is at the foot of this page).
The fellowship and enthusiasm born from these connections created a powerful momentum.
That momentum became the spark that ignited the birth of VACTERL Visionaries, transforming shared experience into collective action and lasting impact.
We are delighted and very proud to see that our work has also been recognised in Europe by ERN eUROGEN
Presentation - VACTERL Association UK Family Event Birmingham 2025