A congenital disorder characterized by partial or complete absence of melanin pigment in the eyes, hair, or skin.
Comprehensive, easy-to-understand information about this condition
How we create this content →Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
Genetic and Rare Diseases Info Center
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
Genetic and Rare Diseases Info Center
The documentation on albinism is limited because it affects a relatively small population, making systematic clinical studies challenging. Additionally, the genetic basis of albinism is still being explored, and the phenotypic variability can complicate clinical characterization. This means that while there is some understanding of the condition, comprehensive data is still developing.
To navigate your care for albinism, consider consulting with a geneticist who has expertise in pigmentary disorders. They can provide insights into genetic testing and management strategies. Additionally, organizations like the Albinism Fellowship and MASSE WORLD offer resources and support for individuals and families affected by albinism. You can access their websites for more information and community support: Albinism Fellowship (https://albinism.org.uk) and MASSE WORLD (https://masseworld.org). Participating in patient registries or natural history studies may also provide valuable insights.
There are currently 20 active clinical trials related to albinism, which may explore various aspects of the condition and potential treatments. You can find more information about these trials at ClinicalTrials.gov by searching for albinism. While there are no orphan drug designations for albinism, the ongoing research offers hope for better understanding and management of the condition.
Actionable guidance for navigating care for albinism
To navigate your care for albinism, consider consulting with a geneticist who has expertise in pigmentary disorders. They can provide insights into genetic testing and management strategies. Additionally, organizations like the Albinism Fellowship and MASSE WORLD offer resources and support for individuals and families affected by albinism. You can access their websites for more information and community support: Albinism Fellowship (https://albinism.org.uk) and MASSE WORLD (https://masseworld.org). Participating in patient registries or natural history studies may also provide valuable insights.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the albinism community
Helpful links for rare disease information and support
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 1, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. 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.