International RVCL Patient and Family Registry

Making Connections within and among Families
Even though retinal vasculopathy with cerebral leukoencephalopathy (RVCL or RVCL-S) is rare, it has a huge impact on the affected families. Because RVCL has a dominant inheritance pattern, approximately 50% of family members are affected.
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.
