Centripetalis recessive dystrophic epidermolysis bullosa (RDEB-Ce) is an extremely rare subtype of dystrophic epidermolysis bullosa (DEB), characterized by blistering which begins acrally and then pro...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for centripetalis recessive dystrophic epidermolysis bullosa is limited due to its extreme rarity, which affects fewer than a few hundred people worldwide. This rarity leads to a lack of systematic clinical studies and comprehensive data collection, making it difficult to establish a clear clinical picture and treatment guidelines.
To navigate your condition, seek specialists such as dermatologists with expertise in epidermolysis bullosa or rare skin disorders. Although no patient organizations are currently identified for RDEB-Ce, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, consider seeking genetic counseling to discuss potential genetic implications for family members, even though no specific genetic basis has been established yet.
Currently, there is one orphan drug designated for centripetalis recessive dystrophic epidermolysis bullosa: Angiotensin (1-7). However, there are no clinical trials available at this time. This designation indicates potential future research avenues, but specific details on trial phases or participation are not yet available. For updates on clinical trials, you can search on ClinicalTrials.gov.
Actionable guidance for navigating care for centripetalis recessive dystrophic epidermolysis bullosa
To navigate your condition, seek specialists such as dermatologists with expertise in epidermolysis bullosa or rare skin disorders. Although no patient organizations are currently identified for RDEB-Ce, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, consider seeking genetic counseling to discuss potential genetic implications for family members, even though no specific genetic basis has been established yet.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for centripetalis recessive dystrophic epidermolysis bullosa is limited due to its extreme rarity, which affects fewer than a few hundred people worldwide. This rarity leads to a lack of systematic clinical studies and comprehensive data collection, making it difficult to establish a clear clinical picture and treatment guidelines.
To navigate your condition, seek specialists such as dermatologists with expertise in epidermolysis bullosa or rare skin disorders. Although no patient organizations are currently identified for RDEB-Ce, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, consider seeking genetic counseling to discuss potential genetic implications for family members, even though no specific genetic basis has been established yet.
Currently, there is one orphan drug designated for centripetalis recessive dystrophic epidermolysis bullosa: Angiotensin (1-7). However, there are no clinical trials available at this time. This designation indicates potential future research avenues, but specific details on trial phases or participation are not yet available. For updates on clinical trials, you can search on ClinicalTrials.gov.
Actionable guidance for navigating care for centripetalis recessive dystrophic epidermolysis bullosa
To navigate your condition, seek specialists such as dermatologists with expertise in epidermolysis bullosa or rare skin disorders. Although no patient organizations are currently identified for RDEB-Ce, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, consider seeking genetic counseling to discuss potential genetic implications for family members, even though no specific genetic basis has been established yet.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for centripetalis recessive dystrophic epidermolysis bullosa is limited due to its extreme rarity, which affects fewer than a few hundred people worldwide. This rarity leads to a lack of systematic clinical studies and comprehensive data collection, making it difficult to establish a clear clinical picture and treatment guidelines.
To navigate your condition, seek specialists such as dermatologists with expertise in epidermolysis bullosa or rare skin disorders. Although no patient organizations are currently identified for RDEB-Ce, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, consider seeking genetic counseling to discuss potential genetic implications for family members, even though no specific genetic basis has been established yet.
Currently, there is one orphan drug designated for centripetalis recessive dystrophic epidermolysis bullosa: Angiotensin (1-7). However, there are no clinical trials available at this time. This designation indicates potential future research avenues, but specific details on trial phases or participation are not yet available. For updates on clinical trials, you can search on ClinicalTrials.gov.
Actionable guidance for navigating care for centripetalis recessive dystrophic epidermolysis bullosa
To navigate your condition, seek specialists such as dermatologists with expertise in epidermolysis bullosa or rare skin disorders. Although no patient organizations are currently identified for RDEB-Ce, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, consider seeking genetic counseling to discuss potential genetic implications for family members, even though no specific genetic basis has been established yet.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
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.
Organizations with orphan designations or approved therapies for this disease
Abeona Therapeutics, Inc.
Other
Amryt Genetics Limited
Other
Castle Creek Biosciences, LLC
Other
Constant Therapeutics LLC
Other
Intercytex Ltd.
Other
Krystal Biotech, Inc.
Other
Nova Anchora, LLC
Other
Phoenicis Therapeutics, Inc.
Other
Phoenix Tissue Repair
Other