Rare skin diseases: many skin diseases have an important impact on the patient's quality of life and some of these diseases, especially some rare skin diseases,are associated with an increased risk of developing tumors, also in other organs. The rare skin diseases can be genetic or acquired. The diagnostic process of rare skin diseases includes an accurate and complete examination of the entire skin and mucous membrane as well as an equally accurate general objective examination and in some cases the use of histological tests via skin biopsy, as well as a careful collection of medical history.
The ability to differentially diagnose all of these conditions requires extensive knowledge and clinical experience. The difficulty in formulating a definitive diagnosis is the main obstacle to establishing adequate treatment.
This is inevitably associated with a load for the patient, which is particularly heavy both from a physical and psychological point of view.
Network: The network brings together international experts in the field of pediatric and adult skin rare diseases, in order to allow a mutual exchange of knowledge, the development of guidelines and "best practice" indications and the organization of events training and updating for doctors and educational for patients.
Activities and objectives: The ERN-Skin aims to improve the organization necessary for the diagnosis, follow-up and therapy of patients with rare skin diseases by pooling technical resources and medical knowledge resources. The multidisciplinary teams for the management of rare skin diseases, coordinated by a dermatologist, include a nurse, a psychologist, a geneticist, a dietitian and a pathologist in collaboration with all other specialists deemed necessary.
Code ORPHA | Code ERN | Denomination |
---|---|---|
RL0060 | ||
RN1650 | ||
RN1700 | ||
ORFHA:1882 | RN0880 | |
ORPHA:1556 | RN0540 | |
ORPHA:158000 | RCG150 | |
ORPHA:1656 | RL0020 | |
ORPHA:183450 | ||
ORPHA:209 | RN0500 | |
ORPHA:2092 | RN0610 | |
ORPHA:218 | RN0550 | |
ORPHA:281201 | RNG070 | |
ORPHA:303 | RN0570 | |
ORPHA:304 | RN0570 | |
ORPHA:312 | RN0600 | |
ORPHA:316 | RN0580 | |
ORPHA:3243 | ||
ORPHA:33364 | RN1710 | |
ORPHA:35125 | RN1660 | |
ORPHA:377 | RB0070 | |
ORPHA:42775 | RN0770 | |
ORPHA:435 | RN1480 | |
ORPHA:464 | RN0510 | |
ORPHA:46486 | RL0050 | |
ORPHA:46487 | RL0030 | |
ORPHA:46488 | RL0040 | |
ORPHA:48104 | RL0090 | |
ORPHA:542 | ||
ORPHA:55 | RCG040 | |
ORPHA:66646 | RD0081 | |
ORPHA:704 | RL0030 | |
ORPHA:738 | RCG110 | |
ORPHA:758 | RN0630 | |
ORPHA:910 | RN0520 | |
ORPHA:98842 |