The Neurovascular Diseases Working Group (NEUROVASC WG) held its spring meeting on 6 March 2026. Members came together to review progress across research, patient resources, education, and registry development.
The NEUROVASC WG focuses on rare conditions affecting the brain’s blood vessels, including CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy) and moyamoya angiopathy. Both conditions require specialist diagnosis and long-term management to help prevent serious complications such as stroke and cognitive decline.
Research and registry updates
The meeting opened with a presentation from the Paris (AP-HP Hôpital Lariboisiere) team on recently published research examining the CADASIL MRI Inventory Tool, a method for categorising MRI findings into simple lesion levels. The study, published in the journal Stroke, found that these measures can provide prognostic information beyond clinical history alone, helping to identify how the condition may develop over a two-year period. The findings suggest the tool could support better risk stratification for individual patients and help identify suitable candidates for clinical trials.
The working group’s discussed extensively on the federated registry system, which allows centres across Europe to contribute patient data whilst retaining full control over their own information. Several collaborative research projects are now under way using data from the CADASIL and moyamoya registries, with participating centres across Europe examining clinical characteristics and treatment approaches in these conditions. Interest in joining the registry is growing, with more centres preparing to come on board.
Educational resources
A significant part of the meeting was dedicated to patient resources and educational materials, with good progress to report across several fronts. The CADASIL Do’s and Don’ts factsheet for patients continues to reach a wide audience across Europe and beyond.
Work on a comprehensive CADASIL e-learning module is advancing, with the structure finalised and a first draft reviewed at the meeting. The module covers pathophysiology, clinical features, radiology, genetics, and disease management. The moyamoya diagnostic and management patient pathway has also been finalised and validated by the group, providing a clear roadmap for care from diagnosis through long-term follow-up. A Do’s and Don’ts factsheet for moyamoya is nearing completion and will be published shortly.
The group also discussed its Pills of Knowledge video series and plans for upcoming webinars, including a joint session with the European Stroke Organisation (ESO), and a session on moyamoya angiopathy at the European Academy of Neurology (EAN) meeting in Geneva.
Summer School and mobility
The NEUROVASC WG will contribute sessions on CADASIL and moyamoya angiopathy to the VASCERN Summer School in Paris in September 2026. Applications to this year’s school have grown significantly, reflecting increasing interest in rare vascular diseases among the next generation of clinicians and researchers.
The new Summer School Alumni Programme, which offers former participants the opportunity to undertake extended learning placements at VASCERN expert centres, is also getting off to a promising start. The first mobility placement under the new programme is already under way at a NEUROVASC centre, giving a participant hands-on experience in the care of rare neurovascular conditions.
Patient advocacy and looking ahead
Patient advocates remain closely involved in the working group’s activities, including reviewing new resources to ensure they address the questions and concerns that matter most to patients and families. Discussions are also under way with a potential new patient organisation in Central and Eastern Europe, which would broaden patient representation across the network.
The meeting also touched on the working group’s future direction, including discussions on expanding the scope of conditions covered by NEUROVASC, developing outcome measures to evaluate the quality of care provided, and strengthening the group’s visibility. An update on the forthcoming CADASIL meeting in Leiden was also shared.
The NEUROVASC WG would like to thank all members who participated and continue to contribute their expertise to improving care for people living with CADASIL, moyamoya angiopathy, and other rare neurovascular conditions across Europe.
→ NEUROVASC Working Group — find out more about the NEUROVASC WG, the expert centres in our network, and the conditions we cover, including CADASIL and moyamoya angiopathy
→ CADASIL Patient Pathway — a comprehensive guide covering diagnosis, genetic testing, and follow-up for patients with CADASIL, developed by the NEUROVASC WG
→ Do’s and Don’ts for CADASIL and Moyamoya — practical guidance for patients and clinicians covering everyday management and emergency situations in CADASIL and moyamoya angiopathy
→ Pills of Knowledge (PoK) — short expert videos on CADASIL and moyamoya angiopathy, including disease staging, pathophysiology, and clinical management
→ NEUROVASC ePAG — meet the patient advocates who represent people living with CADASIL, moyamoya angiopathy, and other rare neurovascular conditions within VASCERN