RVCL affects people of all races and ethnicities, and patients with RVCL have been identified in countries around the world. It is common for RVCL patients to initially be diagnosed as having another disease like multiple sclerosis. However, because genetic testing is becoming more common, we anticipate that many other patients and families with RVCL will be identified in the coming months and years.
Many patients with RVCL have expressed interest in finding ways to get to know each other. Some have also expressed interest in setting up regular Zoom meetings as part of support groups. Please contact us if you would like to opt in to meeting other families with RVCL.
International RVCL Registry
We are working with our colleagues at other institutions, including institutions from Europe and Asia, to assemble an international registry of RVCL patients. This is especially important to help facilitate multinational clinical research and clinical trials so that we can find an effective therapy for RVCL. Please contact us if you are interested in having your information included in a registry.
* RVCL or RVCL-S stands for retinal vasculopathy with cerebral leukoencephalopathy (and systemic manifestations), also known as retinal vasculopathy with cerebral leukodystrophy, cerebroretinal vasculopathy (CRV), or hereditary endotheliopathy with retinopathy, nephropathy, and stroke (HERNS).