Копирам отговора, който получих преди време от Фрайбург. Изпратих запитване за възможността за лечение при тях още в началото на темата Пратих отговора и на Лилибон на ЛС, но тя беше избрала варианта Англия.
Моля, майчета, които сте ло-близки до нея питайте дали да продължим кореспонденцията или се насочват към Америката.
Ето и отговора
On behalf of the EB-Center at the Department of Dermatology, University
of Freiburg, I will answer your mail.
Please help us by answering our following questions: Are you sure, that
the newborn suffers from epidermolysis bullosa dystrophica? Did you
already make an antigen-mapping or electron microscopy for diagnostics?
Do you find other affected family members? Does consanguinity exist?
Please let us know if you are interested in performing an
antigen-mapping, which is an essential diagnostic tool to find the
subtype of eb (simplex, junctionalis, dystophica)? We can perform it for
you; the price is 900-1000 ? per diagnostic sample. We need a skin
biopsy of the edge of a new blister (not older than 12 hours). If it is
a very small blister, the biopsy can include the whole blister or the
margin of a bigger blister, so we can analyze the area between "normal"
skin and blistering area with a variety of antigen-markers.
Kind regards,
Dr. Marie-Luise Preil
--
Epidermolysis bullosa-Center(EB-Center)
Department of Dermatology
University Medical Center
Hauptstr. 7, D-79104 Freiburg
eb-zentrum@uniklinik-freiburg.de
Tel. 0761 270-6614
Fax 0761 270-6791
http://www.uniklinik-freiburg.de/dermatologie
http://www.netzwerk-eb.de
Моля, майчета, които сте ло-близки до нея питайте дали да продължим кореспонденцията или се насочват към Америката.
Ето и отговора
On behalf of the EB-Center at the Department of Dermatology, University
of Freiburg, I will answer your mail.
Please help us by answering our following questions: Are you sure, that
the newborn suffers from epidermolysis bullosa dystrophica? Did you
already make an antigen-mapping or electron microscopy for diagnostics?
Do you find other affected family members? Does consanguinity exist?
Please let us know if you are interested in performing an
antigen-mapping, which is an essential diagnostic tool to find the
subtype of eb (simplex, junctionalis, dystophica)? We can perform it for
you; the price is 900-1000 ? per diagnostic sample. We need a skin
biopsy of the edge of a new blister (not older than 12 hours). If it is
a very small blister, the biopsy can include the whole blister or the
margin of a bigger blister, so we can analyze the area between "normal"
skin and blistering area with a variety of antigen-markers.
Kind regards,
Dr. Marie-Luise Preil
--
Epidermolysis bullosa-Center(EB-Center)
Department of Dermatology
University Medical Center
Hauptstr. 7, D-79104 Freiburg
eb-zentrum@uniklinik-freiburg.de
Tel. 0761 270-6614
Fax 0761 270-6791
http://www.uniklinik-freiburg.de/dermatologie
http://www.netzwerk-eb.de
Това е чудесно!!!
Според мен е повече от добре, да се провери и тази възможност!
Май все още няма реален избор .........
Търси се най-доброто и обнадеждаващо място.
Нека все пак да имаме готовност с вариантите,
а семейството естествено да избере!!!
Дано има избор
, ако искате да се свържа с клиниката във Фрайбург или друга клиника в Германия, само каzвайте 
!