On May 24, 2024, our Neurovascular Diseases Working Group (NEUROVASC WG) gathered at the Leiden University Medical Centre for its Spring Meeting.
This event brought together healthcare professionals and patient advocates committed to improving care for neurovascular diseases, such as CADASIL and Moyamoya. The meeting included dynamic discussions, strategic planning, and updates on various projects aimed at improving patient outcomes and advancing research.
Exploring New Insights in CADASIL and Moyamoya
The meeting kicked off with a presentation by Dr. Saskia Lesnik Oberstein on the latest CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy) research from the host institute. This included a detailed analysis of patient pathways and the genetic basis of the disease. Dr. Dominique Herve (Chair, NEUROVASC WG) and Dr. Stephanie Guey delivered a lecture on the genetics of Moyamoya disease, exploring the role of nitric oxide pathways, BRCC3-MTCPA deletions, and the impact of RNF213 gene mutations.
Patient Pathways and ePAG Updates
A significant portion of the meeting focused on improving the clinical patient pathway for CADASIL. The group reviewed and simplified it, ensuring it is more accessible and efficient for healthcare providers. In addition, Elisabeth Lisack, one of the ePAG (European Patient Advocacy Group) advocates in the NEUROVASC WG gave a brief update on recent activities and ongoing projects, including participation in the VASCERN Summer School and Psychology Working Group, and Do’s and Don’ts factsheets for patients.
Updates and Case Discussions
The meeting included updates on ongoing projects and planned VASCERN activities by Julie Hallac, VASCERN Project Manager, including the successful acquisition of a new EU grant for 2023-2027. The meeting included a session where participants presented and discussed complex clinical cases related to CADASIL and Moyamoya Angiopathy. These collaborative discussions are essential to improving patient care and fostering a community of shared expertise.
Conclusion
The NEUROVASC WG Spring Meeting was a resounding success, providing a comprehensive overview of recent advances, collaborative discussions on clinical cases, and strategic planning for future initiatives. The commitment to improving patient care and advancing research in neurovascular diseases was evident throughout the meeting, paving the way for continued progress in this important area of healthcare.
We thank all participants for their valuable contributions to the continued success of the NEUROVASC WG. For more information and resources from the NEUROVASC WG, please visit their dedicated page here.