Besonderhaut – Initiative for Children with Rare and Genetic Skin Diseases

Prof. Kathrin Giehl
Germany

 

The Besonderhaut project is run by the “Deutsche Stiftung Kinderdermatologie” (German foundation on child dermatology) founded in 2010. This foundation supports children with skin diseases in Germany.

 

The Besonderhaut project consists of different methods and activities to support patients and families with chronic rare and genetic diseases (ichthyosis, epidermolysis bullosa, tuberous sclerosis…). The main goal is to improve the quality of life and self-esteem of child sufferers in order to aid their integration into society. The applicant wants to build a sustainable initiative to help patients cope with their disease in daily-life.

 

This project focuses on different aspects of the child’s life:
– Inclusion in the home environment (kindergarten school….)
– Personal development for children and parents, including a motivational app to help cope with the daily time-consuming treatment regime
– Patient network and patient support group
– Advice and family-oriented assistance
– Support measures in leisure time (targeted activities like summer camps, in cooperation with other foundations)

 

The project began in 2017 and more than 90 patients have been helped by Besonderhaut.

 

With the grant, Prof. Giehl would like to implement an « advisory center for Besonderhaut » in order to be able to support children and their families with professional psychological support and a qualified social education worker. Additionally, the awardee would like to develop educational material to teach children and families how to cope with specific aspects of their disease and develop a program on therapeutic education (basic skin therapy, camouflage, prevention of side effects).

 

Another development project the awardee would like to instigate is a professional awareness campaign about the lives of children with rare and genetic skin diseases and an educational initiative for school children about their skin and prevention of skin problems.

 

[Photo by Derek Thomson on Unsplash]

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