About us
Created by a family who understands
Here & Now was founded from lived experience of childhood rare disease and the gaps families face after diagnosis.
Why Here & Now exists
When a child is diagnosed with a rare disease, families can suddenly find themselves navigating appointments, equipment, travel, uncertainty and costs they never expected. Support is often difficult to find and slow to arrive.
We created Here & Now to offer compassionate, practical help without making families fight through unnecessary barriers. Our aim is simple: listen, respond quickly and help with what matters most to the child and family right now.
Our approach
Family-led
We understand the emotional and practical reality because rare disease is part of our own family story.
Fast and human
We keep applications clear, communicate honestly and consider every family as individuals.
Focused on impact
We support practical needs, inclusion, wellbeing and opportunities to make lasting memories.