AADE (Asociación de Afectados por Displasia Ectodermica) is a non-profit association whose aims are to advocate, promote and carry out all kinds of activities that contribute to improving the quality of life of people affected by ectodermal dysplasia. Work for their full family and social integration.
The association has full capacity and power to determine the activities that it organizes, tending to the achievement of those concrete purposes that are considered more adequate for its members.
How belonging to the ERN-Skin is a plus for patients:
Ectodermal Dysplasias is a low prevalence and multidisciplinary rare disorder. When a patient has been diagnosed with ED, often it is difficult and time consuming to find out the right phenotype affecting each individual provided that a genetic test method for their condition is available. Having this information at hand reduces a lot this lapse of time to start immediate treatment.
What improvements the ERN can bring to the management of rare diseases:
- Identify and share knowledge regarding the “state of the art” in diagnosis and treatment, map experienced Health Care Providers within the network and start immediate multidisciplinary treatment.
- Facilitate international collaboration or synergies in research, especially in rare diseases where expert centers are scarce and spread out in different countries.
- Guide patients to entitle them for their disability degree or other social rights due to their condition.