Serving a broad community of rare-disease stakeholders
Our solutions are designed to support a wide and diverse ecosystem of organisations involved in rare-disease research, care, strategy, and policy.
Because our tools and services are highly flexible, they can be used effectively by both non-specialists and advanced data users. We work with stakeholders who rely on trusted, expert-curated knowledge to inform their decisions and strengthen their activities across the rare-disease landscape.
Our typical partners and clients include organisations across scientific, clinical, industrial, and policy domains. These actors play complementary roles in advancing rare-disease knowledge and improving patient outcomes.
We collaborate with:
Biotech and pharmaceutical companies
Organisations involved in therapeutics, diagnostics, and development programmes that require precise and contextualised rare-disease knowledge.
Health-tech firms
Actors developing digital tools, platforms, or analytical solutions that benefit from structured and harmonised datasets.
Charities and foundations
Institutions supporting strategic projects, research initiatives, or advocacy activities requiring reliable information.
Patient organisations
Groups that need accessible, validated knowledge to support community engagement, communication, and programme development.
Health authorities
Public bodies responsible for planning, regulation, and policy formulation, who require accurate, evidence-based data.
Research funders
Funding organisations seeking to evaluate proposals, define priorities, and ensure that investments align with reliable knowledge.
Consultants
Advisory partners providing strategic or operational support to organisations in need of expert-curated insights.
Contract Research Organisations (CROs)
Entities managing studies, trials, or analytical activities that rely on accurate and harmonised data.
European Reference Networks (ERNs)
Cross-border networks coordinating expertise and improving care for rare-disease patients, supported by shared knowledge resources.
An Adaptive Approach to Diverse Needs
Each organisation we work with has unique objectives, contexts, and operational requirements. To respond effectively, our pricing model is fully adaptable and depends on:
- the level of customisation required,
- the complexity of the request,
- he preferred format, structure, and mode of delivery.
This flexible approach ensures that every partner receives solutions aligned with their needs, resources, and strategic priorities.
A Shared Commitment to Progress
By working with a broad community of stakeholders, we contribute to a more coherent, informed, and collaborative rare-disease ecosystem. Together, we aim to transform expert-curated data into knowledge that strengthens decisions, supports innovation, and benefits patients across all contexts.