Genetics / Genetic Counseling

16 EDS specialists in this category

Geneticists and genetic counselors provide definitive EDS diagnosis through clinical evaluation and genetic testing, help identify the specific EDS subtype, and advise on family planning implications. Genetic testing can confirm 12 of the 13 EDS subtypes — hypermobile EDS (hEDS), the most common type, is diagnosed clinically using the 2017 criteria since no causative gene has been identified. A genetics evaluation typically includes family history review, physical examination for tissue fragility, and targeted gene panels. Genetic counselors also help patients understand inheritance patterns and communicate results to family members.

Genetics / Genetic Counseling specialists are most concentrated in Florida (5), Indiana (2), Louisiana (2).

Last updated 2026-04-18

About Genetics / Genetic Counseling for EDS Patients

A geneticist is often the specialist who gives you a definitive EDS diagnosis and identifies which type you have. This matters because different EDS subtypes carry different risks — vascular EDS, for example, requires monitoring that other types may not. Getting a clear diagnosis also helps your other doctors make better treatment decisions.

What to Expect

The first visit is usually long — plan for 60 to 90 minutes. The geneticist will review your family history in detail, examine your skin and joints, and assess your flexibility using the Beighton score. They may order a blood draw for genetic testing, which can take several weeks for results. If you have family members with similar symptoms, bring their medical information if possible.

Common Treatment Areas

EDS Articles & Guides

All Articles →

Related Specialties

California (1)

Colorado (1)

Florida (5)

Georgia (1)

Indiana (2)

Kentucky (1)

Louisiana (2)

Massachusetts (1)

New York (1)

Virginia (1)