Comprehensive, easy-to-understand information about this condition
How we create this content →The limited documentation for alopecia-intellectual disability syndrome 1 reflects its rarity and the recent identification of its genetic basis. Conditions like this often lack extensive clinical studies due to the small number of affected individuals, making comprehensive characterization challenging. Ongoing research may provide more insights in the future.
The hallmark features of alopecia-intellectual disability syndrome 1 include alopecia, which is present in all affected individuals, and severe intellectual disability. Alopecia universalis, characterized by total hair loss, is observed in a significant subset of patients (30-79%). These features indicate a profound impact on both physical appearance and cognitive development.
To navigate alopecia-intellectual disability syndrome 1, consider consulting a geneticist or a specialist in genetic disorders, as they can provide insights into genetic counseling and testing options. While there are currently no identified patient organizations, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov may offer valuable information. Engaging in genetic counseling can help assess risks for family members and discuss potential future research opportunities.
Actionable guidance for navigating care for alopecia-intellectual disability syndrome 1
To navigate alopecia-intellectual disability syndrome 1, consider consulting a geneticist or a specialist in genetic disorders, as they can provide insights into genetic counseling and testing options. While there are currently no identified patient organizations, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov may offer valuable information. Engaging in genetic counseling can help assess risks for family members and discuss potential future research opportunities.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation for alopecia-intellectual disability syndrome 1 reflects its rarity and the recent identification of its genetic basis. Conditions like this often lack extensive clinical studies due to the small number of affected individuals, making comprehensive characterization challenging. Ongoing research may provide more insights in the future.
The hallmark features of alopecia-intellectual disability syndrome 1 include alopecia, which is present in all affected individuals, and severe intellectual disability. Alopecia universalis, characterized by total hair loss, is observed in a significant subset of patients (30-79%). These features indicate a profound impact on both physical appearance and cognitive development.
To navigate alopecia-intellectual disability syndrome 1, consider consulting a geneticist or a specialist in genetic disorders, as they can provide insights into genetic counseling and testing options. While there are currently no identified patient organizations, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov may offer valuable information. Engaging in genetic counseling can help assess risks for family members and discuss potential future research opportunities.
Actionable guidance for navigating care for alopecia-intellectual disability syndrome 1
To navigate alopecia-intellectual disability syndrome 1, consider consulting a geneticist or a specialist in genetic disorders, as they can provide insights into genetic counseling and testing options. While there are currently no identified patient organizations, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov may offer valuable information. Engaging in genetic counseling can help assess risks for family members and discuss potential future research opportunities.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation for alopecia-intellectual disability syndrome 1 reflects its rarity and the recent identification of its genetic basis. Conditions like this often lack extensive clinical studies due to the small number of affected individuals, making comprehensive characterization challenging. Ongoing research may provide more insights in the future.
The hallmark features of alopecia-intellectual disability syndrome 1 include alopecia, which is present in all affected individuals, and severe intellectual disability. Alopecia universalis, characterized by total hair loss, is observed in a significant subset of patients (30-79%). These features indicate a profound impact on both physical appearance and cognitive development.
To navigate alopecia-intellectual disability syndrome 1, consider consulting a geneticist or a specialist in genetic disorders, as they can provide insights into genetic counseling and testing options. While there are currently no identified patient organizations, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov may offer valuable information. Engaging in genetic counseling can help assess risks for family members and discuss potential future research opportunities.
Actionable guidance for navigating care for alopecia-intellectual disability syndrome 1
To navigate alopecia-intellectual disability syndrome 1, consider consulting a geneticist or a specialist in genetic disorders, as they can provide insights into genetic counseling and testing options. While there are currently no identified patient organizations, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov may offer valuable information. Engaging in genetic counseling can help assess risks for family members and discuss potential future research opportunities.
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 6, 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.