You are not alone

Beyond Disintegration hopes to provide a safe and supportive community for families affected by profound developmental regression. 

We understand how isolating these experiences can feel, particularly when families are left navigating severe regression, uncertainty, fragmented systems, and limited answers. 

As the organisation develops, we hope to help: 

✓ connect families through shared lived experience 

✓ raise awareness of profound developmental regression

✓ promote scientific dialogue and subgroup recognition 

✓ share educational resources and research developments 

✓ support future collaboration between families, clinicians, and researchers 

✓ help families feel less isolated in their search for understanding 

We also hope to keep families and supporters updated on organisational progress, research developments, publications, awareness initiatives, and future projects through regular newsletters and community communications. 

We are committed to handling personal information responsibly and ethically as the organisation develops. 

*We do not offer medical advice. 

To join our community, please fill out the google form on our contact page.