Because Roberts syndrome is very rare, it may be hard to find other people who are affected. However, it is still possible to try to contact other people with Roberts syndrome. Social media or websites may be useful. Your doctor may be able to help you contact people who are doing or have done research on patients with Roberts syndrome, and help find other patients that they have worked with. For more information about researchers, see ClinicalTrials.gov.
It is also possible to reach out to or meet people with similar symptoms, but different genetic disorders. For example, cleft lip and cleft palate (openings in the upper lip or roof of the mouth) are common in a few genetic disorders. It may be helpful to speak to other people with similar symptoms to learn more about treatment.
Other Questions About Roberts syndrome
- Why didn’t I know I was a carrier of Roberts syndrome before I had my child?
- Who else in my family should I test for Roberts syndrome?
- Where do I find other people with Roberts Syndrome?
- What specialist doctors should I see with Roberts syndrome?
- What is the usual abbreviation for Roberts syndrome?
