New to the Vici Diagnosis?

A Vici syndrome diagnosis can be overwhelming. Connecting with other families who have experienced Vici syndrome firsthand is often the best way to find answers and support. Our Facebook family support group currently has over 85 members all connected to Vici syndrome. We are all here to help. In our supportive group, we share our experiences and often discuss topics like nutrition, medical procedures, medical providers, and country-specific resources and programs. Our members join us from many different countries and locations and have experience with the details about their specific healthcare systems. 

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can’t travel to them for care.

You can find more tips in the GARD guide, How to Find a Disease Specialist. Please explore the rest of this page to find resources that can help you find specialists.


Healthcare Resources

To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.


Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer.

Please visit the Vici Syndrome Family Support Facebook Group


The following resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

  • The National Organization of Disorders of the Corpus Callosum provides a list of FAQs about disorders of the corpus callosum.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine. 
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge. 
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Vici syndrome. Click on the link to view a sample search on this topic.

Living with a genetic or rare disease can impact the daily lives of patients and families. In this 2016 NCATS Video Profile, Michael and Rachel Harris discuss their son’s life with Vici syndrome. As an update, Dovid is now 13 years old!


Please visit the Vici Syndrome Family Support Facebook Group