Beckwith-Wiedemann Syndrome Resources

Educational Materials



Beckwith-Wiedemann Syndrome Support Group – U.K. supports families of children with Beckwith-Wiedemann syndrome, promotes public and professional awareness of BWS, and supports and encourages research.

Changing Faces provides support and promotes respect for everyone with a visible difference. Helpful resources include advice for meeting new people when you have a visible difference.

It addresses the growing concern surrounding the misuse of genetic information in health insurance and employment decisions.

FACES: The National Craniofacial Association assists children and adults who have craniofacial disorders resulting from disease, accident or birth.

GeneReviews are expert-authored, peer-reviewed disease descriptions focused on the diagnosis, management and genetic counseling for people with inherited conditions.

The Genetics Home Reference is an online guide from the National Institutes of Health designed to help you understand genetic conditions. It includes a handbook, glossary and resources.

NCI's website includes links to information about treatment, clinical trials, testing and research.

The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.

Philly Phaces provides peer support, advocacy, and resources to help Philadelphia-area children facing appearance differences from craniofacial abnormalities and cleft lip and palate.

GINA is a federal law designed to protect people in the United States from genetic discrimination in health insurance and employment.