Rare congenital skin diseases comprise a group of often severe and potentially life-shortening dermatoses caused by somatic or germline mutations in genes that are essential for epidermal homeostasis, skin stability or physiological differentiation of cutaneous structures. Patients with these diseases usually have very sensitive skin and can develop severe symptoms in other organ systems.
In close cooperation between the Department of Pediatric Dermatology at AUF DER BULT Children's Hospital and the Clinical Department of Dermatology and Allergology at MHH, newborns, infants, young children, schoolchildren, adolescents and adults with epidermolysis bullosa, congenital ichthyosis and congenital nevi are treated.
This network has succeeded in establishing a multi-professional team for the outpatient, day-clinic and inpatient care of affected patients and their families. The core tasks of the individual center are the comprehensive clinical care of affected patients of all age groups, parent and patient education, long-term care to prevent cutaneous and extracutaneous complications during childhood and adolescence as well as an adequate transition to adult medicine.
Competencies of the individual center
- Epidermolysis bullosa (EB)
- Congenital ichthyoses (KI)
- Congenital melanocytic nevi (KMN)
- Others, e.g. ectodermal dysplasia, erythropoietic protoporphyria
Contact details
Hannover Medical School
Centre for Rare Diseases OE 5130
Individual Center for Rare Congenital Skin Diseases
Carl-Neuberg-Str. 1
30625 Hannover
zse@mh-h annover.de
You can find further information under the following links:
There are already numerous self-help groups for the individual rare genetic syndromes and the various cancer predisposition syndromes. You can find more information under the following links:
- To the website "Portal for rare diseases and orphan drugs" Orphanet
- To the website "Care atlas for people with rare diseases" SE-Atlas
- To the website "Alliance of Chronic Rare Diseases" ACHSE e.V.
Please refer to the list below for an overview of ZSE specialist centers participating in registries:
Clinical trials with the participation of ZSE-B centers:
You can download the current publications of this ZSE-B center as PDF files under the following link: