An anterior midline defect with variable expression involving the infraumbilical abdominal wall including the pelvis, urinary tract, and external genitalia.
Comprehensive, easy-to-understand information about this condition
How we create this content →Documentation for BEEC is limited primarily because it affects a small number of individuals worldwide, making systematic clinical studies challenging. The complex nature of the condition, which involves multiple organ systems, also contributes to the difficulty in establishing comprehensive clinical features and treatment protocols. Ongoing research may provide more insights in the future.
To navigate your care for BEEC, it is essential to consult with a pediatric urologist or a specialist in congenital anomalies who has experience with bladder exstrophy and related conditions. While there are currently no identified patient organizations for BEEC, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may provide support and information. Genetic counseling could be beneficial for family planning and understanding inheritance risks, even though specific genetic factors are not yet identified. Additionally, consider looking for any ongoing studies or registries that may be established in the future.
Actionable guidance for navigating care for bladder exstrophy-epispadias-cloacal extrophy complex
To navigate your care for BEEC, it is essential to consult with a pediatric urologist or a specialist in congenital anomalies who has experience with bladder exstrophy and related conditions. While there are currently no identified patient organizations for BEEC, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may provide support and information. Genetic counseling could be beneficial for family planning and understanding inheritance risks, even though specific genetic factors are not yet identified. Additionally, consider looking for any ongoing studies or registries that may be established in the future.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Documentation for BEEC is limited primarily because it affects a small number of individuals worldwide, making systematic clinical studies challenging. The complex nature of the condition, which involves multiple organ systems, also contributes to the difficulty in establishing comprehensive clinical features and treatment protocols. Ongoing research may provide more insights in the future.
To navigate your care for BEEC, it is essential to consult with a pediatric urologist or a specialist in congenital anomalies who has experience with bladder exstrophy and related conditions. While there are currently no identified patient organizations for BEEC, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may provide support and information. Genetic counseling could be beneficial for family planning and understanding inheritance risks, even though specific genetic factors are not yet identified. Additionally, consider looking for any ongoing studies or registries that may be established in the future.
Actionable guidance for navigating care for bladder exstrophy-epispadias-cloacal extrophy complex
To navigate your care for BEEC, it is essential to consult with a pediatric urologist or a specialist in congenital anomalies who has experience with bladder exstrophy and related conditions. While there are currently no identified patient organizations for BEEC, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may provide support and information. Genetic counseling could be beneficial for family planning and understanding inheritance risks, even though specific genetic factors are not yet identified. Additionally, consider looking for any ongoing studies or registries that may be established in the future.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Documentation for BEEC is limited primarily because it affects a small number of individuals worldwide, making systematic clinical studies challenging. The complex nature of the condition, which involves multiple organ systems, also contributes to the difficulty in establishing comprehensive clinical features and treatment protocols. Ongoing research may provide more insights in the future.
To navigate your care for BEEC, it is essential to consult with a pediatric urologist or a specialist in congenital anomalies who has experience with bladder exstrophy and related conditions. While there are currently no identified patient organizations for BEEC, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may provide support and information. Genetic counseling could be beneficial for family planning and understanding inheritance risks, even though specific genetic factors are not yet identified. Additionally, consider looking for any ongoing studies or registries that may be established in the future.
Actionable guidance for navigating care for bladder exstrophy-epispadias-cloacal extrophy complex
To navigate your care for BEEC, it is essential to consult with a pediatric urologist or a specialist in congenital anomalies who has experience with bladder exstrophy and related conditions. While there are currently no identified patient organizations for BEEC, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may provide support and information. Genetic counseling could be beneficial for family planning and understanding inheritance risks, even though specific genetic factors are not yet identified. Additionally, consider looking for any ongoing studies or registries that may be established in the future.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Inheritance patterns describe how genetic conditions are passed from parents to children.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 7, 2026
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
AI-Generated Content: This summary was generated using AI. Always consult with qualified healthcare providers for medical guidance.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.