Backbone support for
Small patient associations & rare diagnoses
We maintain the structure – you own the voice.
Your backbone
Small associations must be visible – and survive
Behind many small and rare patient associations are strong voices.
Often one or a few passionate individuals. Relatives. People with lived experience.
They have the will.
They have the knowledge.
They have the commitment.
But they often lack something else:
- Administrative capacity
- Legal structure
- Financial overview
- Funding experience
- Compliance and governance
And without that, even the most important voices risk disappearing.
We have listened to the small associations and rare diagnosis groups.
We know that the problem is not a lack of commitment – it is a lack of support.
That is why we offer a Backbone model.
A model where we:
✔ Maintain the structure
✔ Support administration and governance
✔ Help with funding and reporting
✔ Ensure transparency and compliance
– while you retain your voice, your priorities, and your direction.
What does backbone mean in practice?
It means that we can support you with:
Administration and structure
- Legal framework
- Governance advice
- Secretarial functions
Finance and funding
- Fund and project applications
- Budget and project management
- Accounting and documentation
Compliance and accountability
- GDPR and data management
- Contracts and cooperation agreements
- Clear project accounting #
#But we do not control.
#We do not take over.
#We do not speak on your behalf
Autonomy is the basic principle
Each diagnosis and patient group:
- Owns its identity
- Owns its messages
- Owns its data
- Owns its priorities
Backbone means support – not control.
Why it is important
Without support, it is often the most resource-rich disease areas that survive.
The backbone model:
- Lowers the barrier to organization
- Increases diversity
- Gives small voices real access
- Strengthens equality in patient representation
We believe that sustainable healthcare development requires that even the smallest groups can stand strong.
We maintain the structure – you own the voice.
We maintain the structure – you own the voice.
Why it matters? Without support, it is often the most resource-rich disease areas that survive.
The Backbone model:
- Lowers the barrier to organization
- Increases diversity
- Gives small voices real access
- Strengthens equality in patient representation
We believe that sustainable healthcare development requires that even the smallest groups can stand strong.
A sustainable economic model
The backbone model is not just an administrative solution.
The backbone model is not just an administrative solution, it’s made with respect for autonomy.
It’s a structural and economically sustainable approach to strengthening small and rare patient groups. By bringing together administrative functions, governance support, and funding expertise in one place
