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 is a rare, complex condition that touches patients, families, clinicians, and researchers across many geographies. We were founded to help connect them — 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.
A condition that benefits from coordination.
CADASIL is the most common monogenic cause of stroke in adults — and it is also rare, complex, and often under-recognized outside specialized academic centres. Closing the gap between what is known clinically and what reaches patients, families, and everyday clinicians is what we're built to help with.
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
We make CADASIL easier to recognize and easier to understand — for patients and families navigating a new diagnosis, for clinicians who may see CADASIL only once in a career, and for a wider public that is still learning the name.
- Plain-language explanations of CADASIL for patients and families
- Clinician-facing reference material to support earlier recognition
- Awareness moments tied to Stroke Month and Rare Disease Day
Research Connection
The more people who are recognized and diagnosed, the more people are able to take part in CADASIL research. We help by using our awareness work to support earlier diagnosis, and by pointing patients and families toward research opportunities as we come across them.
- Awareness work that supports earlier diagnosis — the foundation research depends on
- Helping patients and families find CADASIL research opportunities
- Sharing information about active academic and clinical studies
Patient & Family Support
Life with CADASIL touches whole families — patients, partners, parents, and children. We're building the kind of resource we wish had been there at diagnosis: honest, practical, and grounded in the experience of people who have lived it.
- Guidance for people who are newly diagnosed and the people around them
- Support for partners, caregivers, and the next generation
- Signposting to genetic counselling and other help that exists
Advocacy & Partnerships
CADASIL often sits in the space between stroke medicine and rare-disease work — and it can be easy to miss in either. We speak up for the community in both worlds and work alongside organizations that share our goals, so more people find the right conversation at the right time.
- Working with stroke and rare-disease organizations
- Supporting informed conversations about diagnosis and care
- Partnerships that help more people find better support
How we work
Patient-first. Science-anchored. Globally connected.
How we work is small, careful, and connected. We take our cues from people living with CADASIL, check our medical content with clinicians, and work alongside the organizations already doing good work in this space.
- We start with real patient and family experience
- We check medical content with neurology and genetics specialists
- We work alongside stroke and rare-disease organizations, not separately from them
- We're building for the long term, one honest piece of work at a time
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.
Building alongside the Sunnybrook Foundation.
CADASIL Global Foundation partners with the Sunnybrook Foundation as the fundraising pathway for CADASIL research at Sunnybrook — one of Canada's leading academic health centres. Donations through this pathway support CADASIL research at Sunnybrook.