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Retinal Vasculopathy with Cerebral Leukoencefalopathy and Systemic manifestations (RVCL-S) is a rare, hereditary disorder. Through this website we hope to inform patients, family members, caregivers and professionals about RVCL-S. You can also find the latest new about RVCL-S research done by the LUMC team on this website.

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Recent news

  • European Stroke Congress

    Researchers of the LUMC have visited the European Stroke Congress (ESOC) in Lyon. They gave a short presentation about their work on RVCL-S. By visiting international congresses they try to increase the awareness of RVCL-S worldwide.

  • Support our research!

    Donate to support RVCL-S research in the LUMC. All help is appreciated and will go towards understanding RVCL-S and finding a treatment. Even small amounts can contribute towards (partially) funding our projects. Moreover, donations are often tax deductible. For more information click here.

  • Review about RVCL-S

    Physicians of the LUMC have published a new review about RVCL-S. They describe the key features of the disorder and the most common complications that can occur. The latest scientific insights abour RVCL-S are also being discussed. The review is published in the scientific paper Cerebral Circulation Cognition and Behaviour. You can read the full review here.

  • New website

    As of today, the new RVCL-S website of the LUMC is live! Information for patients, their relatives and care providers is bundled on this website. You can also find the latest news about the research into RVCL-S here.

  • Irene de Boer received Dekkerbeurs for research into RVCL-S

    Irene de Boer received a Dekkerbeurs from the Dutch Heart Foundation! With this prestigious grant she will continue performing research into RVCL-S.

  • Eye abnormalities on OCT scans in RVCL-S

    Researchers at the LUMC have recently published about abnormalities in the eyes of RVCL-S patients. With OCT (Optical Coherence Tomography) scans they evaluated the thickness of the retina. They found that the retina was thinner in RVCL-S patients compared to healthy controls. This already occurred in the absence of other abnormalities during ophthalmological evaluations. Click here for more information!

  • Searching for treatment with new techniques

    RVCL-S research is being financed by stichting Dioraphte. Prof. Terwindt and drs. de Boer were interviewed about this new study. The interview can be found on de website of Dioraphte (in Dutch).

  • Mouse model teaches researchers more about RVCL-S

    Mice with the same mutation in their DNA as RVCL-S patients were studied to learn more about the disorder. The life expectancy of the mice was decreased. Furthermore, the function of the blood vessels was impaired and strokes led to more damage then in healthy mice. Researchers have published about this in the journal Stroke. For more information click here.

  • Brain abnormalities on MRI in RVCL-S

    Researchers at the LUMC have described the abnormities that are found in the brain in RVCL-S patients. It is their hope that this will help physicians recognize the disorder. This will help speed up the diagnostic process and prevent unnecessary potentially harmful testing. The results have been published in medical journal American Journal of Neuroradiology. The whole article is available here.  

  • UpToDate RVCL-S

    To increase knowledge about RVCL-S across the globe, researchers at the LUMC have written an article for UpToDate. Information about symptoms, complications and guidelines for genetic testing and treatment are discussed. The complete article can be read at UpToDate.

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