Fragmented research
Concentrated in a handful of academic centres, with limited national coordination, no widespread registry, and constrained dedicated funding.
Our mission
A coordinated response to CADASIL.
CADASIL has been clinically important and systemically overlooked for too long. We were founded to change that — patient-first, science-anchored, and globally connected.
Mission
To improve the lives of individuals and families affected by CADASIL by accelerating awareness, enabling earlier diagnosis, supporting research, and strengthening support systems.
Vision
A world where CADASIL is recognized early, accurately diagnosed, actively researched, and supported through coordinated care.
Clinically important. Systemically overlooked.
CADASIL is the most common monogenic cause of stroke in adults. Yet it remains underdiagnosed, low-awareness, and under-resourced — particularly outside specialized academic centres.
Diagnostic delay
Patients commonly report years — sometimes decades — between first symptoms and a confirmed CADASIL diagnosis.
Limited support infrastructure
Clear care pathways, accessible educational materials, and peer community are uneven across health systems and geographies.
Four strategic pillars.
Each pillar is built around a measurable outcome — not just an aspiration.
Awareness & Education
Increase awareness of CADASIL among physicians, patients, and the public. Provide clear, accessible, evidence-informed resources. Drive media stories that turn invisible suffering into named experience.
- Plain-language educational content
- Clinician quick-reference and physician handouts
- Awareness campaigns aligned with Stroke Month and Rare Disease Day
Research Enablement
Connect patients with research opportunities, support clinical trial recruitment, and amplify the work of academic centres advancing CADASIL science.
- Patient–investigator matching
- Trial-readiness infrastructure
- Registry & biobank advocacy
Patient & Family Support
Provide clear care pathways, peer connection, and practical guidance for life with CADASIL — for patients, partners, and the next generation.
- Newly-diagnosed and family-planning resources
- Caregiver support content
- Genetic counselling pathway support
Advocacy & System Change
Improve access to genetic testing, standardize care across health systems, and integrate CADASIL into stroke and rare-disease frameworks at the policy level.
- Genetic testing access advocacy
- Integration with stroke and rare-disease bodies
- Policy & funding partnerships
How we work
Patient-first. Science-anchored. Globally connected.
We do our best work in collaboration. Our model centres patient experience, anchors decisions in clinical evidence, and partners with the organizations and individuals already moving the field forward.
- Lead with the human story — real patient and family experience
- Anchor with clinical leadership in neurology and neurogenetics
- Integrate with existing stroke and rare-disease ecosystems
- Build for the long game — registries, infrastructure, advocacy
The principles that guide us.
Integrity
Honest about what we know — and what we don't. Evidence over speculation. People over platforms.
Inclusion
Built for patients and families across geographies, languages, and backgrounds. CADASIL does not discriminate; neither do we.
Urgency
Every delayed diagnosis has a cost. We move with the urgency the disease demands.
Collaboration
We do not duplicate; we connect. Our partners include patient organizations, academic centres, and policy bodies.
Hope
The science is moving. We meet that progress with the awareness, infrastructure, and community it deserves.
Excellence
From clinical accuracy to design craft, every artifact we produce should earn the trust of the people who rely on it.
Why a dandelion?
Awareness that spreads on the wind. Hope amid fragility. Resilience across generations. Vascular branching echoed in nature. The dandelion sits beside our clinical imagery as a reminder that this is, at its heart, a human story.