Advocacy
Collective Advocacy
Better outcomes, stronger voices and empowered communities
People born with VACTERL Association deserve access to the knowledge, tools, and support needed to become informed experts in their own condition.
Through education, shared experience, and trusted resources, we hope to empower individuals to understand their anatomy, recognise changes in their health, and confidently participate in decisions about their care.
We believe that informed individuals are better able to communicate with healthcare professionals, navigate complex medical systems, and advocate for the treatment, respect, and accommodations they need throughout their lives.
By building knowledge and confidence, we want to help people move from passive recipients of care to active partners in their healthcare.
Our goal is to foster independence, self-advocacy, and lifelong confidence, ensuring that every person born with VACTERL Association has the ability, voice, and support to shape their own health journey and live fully and well.
To help you with this we have created a resource with links to other organisations of interest.
Identity Beyond Diagnosis
Voiceless isolation
Managing the unpredictable
Exhaustion
You are not alone
We survived the storm
Every life matters
We heal in stories
Find strength in community
Scars are a sign of strength
Sharing stories lighten the load
Learn about your condition
Insight - a lifeline to others
Work together to solve challenges
Knowledge. Empowerment. Advocacy.
Our Stories. Our Challenges. Our Achievements
Navigating health systems and managing care can be challenging.
Learning about our bodies, understanding our condition(s)
should start early.
Young people want control over their care.