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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.

Retinal oxygen saturation in RVCL-S

Drs. de Boer gave a presentation on oxygen saturation of the retinal blood vessels at the 10th congress of the European Academy of Neurology (EAN). Her research shows that the oxygen saturation of RVCL-S patients is higher in the veins of the retina compared to healthy controls. The difference in oxygen saturation between arteries and veins was smaller in RVCL-S patients. This teaches us more about how retinopathy in RVCL-S can develop.
NFL and GFAP in RVCL-S

Researchers from the LUMC and Amsterdam UMC have published a new article about the biomarkers NFL and GFAP in RVCL-S. They measured the levels of these biomarkers in blood and cerebrospinal fluid and compared them with healthy controls. They found increased NFL values in (pre-)symptomatic RVCL-S patients. They also found an association between NFL and GFAP levels and the patients’ cognitive function. You can read the full article here.
RVCL-S patient meeting

In January the Leiden University Medical Center (LUMC) has organized three online RVCL-S patient meetings. The evenings were a great success! There were several short presentations about the RVCL-S research. There was also an opportunity for patients and family members to ask questions to the doctors and researchers of the LUMC. A short summary of what was discussed during the patient evenings can be found here (Dutch only).
Eye abnormalities on OCTA scans in RVCL-S

Researchers at the LUMC have recently published about abnormalities in the eyes of RVCL-S patients. With OCTA (Optical Coherence Tomography Angiography) scans they evaluated the blood vessels of the retina. They found that their were less blood vessels present in RVCL-S patients compared to healthy controls. Click here for more information!
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!