Practical support
Help with equipment, mobility and sensory aids, therapy items and other essentials that make daily life easier.
Rare doesn’t mean alone
Support for children living with rare diseases
A diagnosis can change family life overnight. We provide fast, practical and compassionate support—when it can make the greatest difference.
Simple process Human decisions
Registered charitySC055345
Scotland pilotUK-wide support is a future aim
Family-ledBuilt from lived experience
How we help
Real support, without unnecessary barriers
From practical equipment to a much-needed family experience, support is shaped around each child’s circumstances.
Fast decisions
A simple, compassionate process designed to get help to families quickly when timing matters.
Moments that matter
Family days out, memory-making and wellbeing support that give children something positive to look forward to.
Who can apply
Clear criteria.
Human decisions.
- Child is under 18
- Lives in Scotland for this pilot
- Has a confirmed rare disease
- Professional evidence of the diagnosis available
Why we exist
Created by a family who understands.
Here & Now began with Ella-Rose and our family’s own experience of rare disease. We understand the uncertainty, the appointments and the exhausting search for the right support.
That experience became a promise: to listen, respond with compassion and help families feel less alone.
Read our storySupport when it matters