Comitato UFFI - United For Fighting Ichthyosis
Donation protected
This fundraiser supports the work of Comitato UFFI - United for Fighting Ichthyosis in thr fight against TGM1 Congenital Lamellar Ichthyosis.
UFFI is funding experiemental work lead by Professor Heiko Traupe and his team at the University of Münster and the Molecular Institue of Leibniz for the creation of a hydrogel that will compensate the missing enzyme in the sking of TGM1 Lamlellar Ichthyosis patients.
WHAT IS LAMELLAR ICHTHYOSIS TGM1-DEFICIENT?
Congenital ichthyosis is a severe genetic skin disease (also called fish-like scaling disease)
The term is nowadays used for a large group of disorders of cornification.
Congenital implies that the disease is already present at birth, but sometimes only manifests itself later in life.
Lamellar ichthyosis TGM1-deficient is regarded as homeostatic response to barrier defect: patients can’t produce an enzyme that works like a skin glue (TGM1) which is vital in creating the skin barrier.
Congenital types of ichthyosis are very severe and rare diseases affecting between 1 to 2 people per 100.000.
Comitato UFFI was born in 2018 feom the parents of twins Leonor and Beatriz affected by Lamellar Ichthyosis, for the purpose of funding the important wokr of Prof. Traupe and his team.
Organizer
Elena Ravano Calheiros
Organizer
Lisbon, 11