Epidermolysis Bullosa Simplex, generalized intermediate - Patient Associations
AUSTRIA
DEBRA Austria
Am Heumarkt 27/1
1030 Wien
Austria
Rainer Riedl
rainer.riedl@debra-austria.org
Website: www.debra-austria.org, www.eb-house.org
BELGIUM
DEBRA Belgium
rue Piralewe 1
4600 Lanaye
Belgium
Stief Dirckx
Ingrid Jageneau
info@debra-belgium.org
Website: www.debra-belgium.org
BULGARIA
DEBRA Bulgaria
Lagera, ul. Pliska No 29, et.1, ofis 2
1000 Sofia
Bulgaria
Ms Desislava ABADZHIEVA
contact@debrabg.org
Website: -
CROATIA
DEBRA Croatia
Prilaz Gjure Deželica 30
10 000 Zagreb
Croatia
Vlasta Zmazek
vlasta@debra-croatia.com
Website: www.debra-croatia.com
CZECH REPUBLIC
DEBRA Czech Republic
Department of Pediatric Dermatology The First Pediatric Clinic,
University Hospital Brno
Cernopolni 9
625 00 Brno
Czech Republic
info@debra-cz.org
FINLAND
Finnish Central Organisation for Skin Patients
Karjalankatu 2 B, 3rd floor
00520 Helsinki
Finland
harvinaiset.ihosairaudet@iholiitto.fi, toimisto@iholiitto.fi
Website: www.iholiitto.fi
FRANCE
DEBRA FRance (Épidermolyse Bulleuse - Recherche, Association)
c/o Mutuelle du Midi
16, La Canebière
BP 31866
13221 Marseille cedex 01
France
Guy Verdot, president
Mireille Nistasos, administrative secretary
mireille.nistasos@ag2rlamondiale.fr
Website : http://www.debra.fr
GERMANY
I.E.B.-DEBRA Germany
Mühlweg 23
35216 Biedenkopf
Germany
Netty Müller-Grosse
mueller-grosse@t-online.de
Website: www.ieb-debra.de
GREECE
Association of peope with genetic disorders
Medical genetics, University of Athens,
Aghia Sophia Children's hospital
TO MELLON - Association of people with genetic disorders
Makrinitsas 16, Abelokipoi
115 22 Athens
Greece
Dr Helen Fryssira
info@tomellon.com.gr
HUNGARY
DEBRA Hungary
Maria u 41
Budapest
Hungary
H-1085
Prof. Sarolta Kárpáti
Orsolya Mesitsne Varga
debra@bor.sote.hu, mesitsorsi@freemail.hu, karsar@bor.sote.hu
Website: www.debra.hu
IRELAND
DEBRA Ireland
La Touche House, 1 Grove Road
Rathmines, Dublin 6
Ireland
Chairperson: Colm Darling
CEO: Jimmy Fearon
info@debraireland.org
Website: www.debraireland.org
ITALY
DEBRA Italia Onlus-Associazione per la ricerca sull'Epidermolisi Bollosa Distrofica
Via P. Mascagni 152-00199; Ufficio Via Arno 96-00198 Roma
00198 Roma
Italia
Website: www.debraitalia.org
"M. Baschirotto" Association for rare diseases (ONLUS)
via B. Bizio,1, Costozza di Longare
Vicenza
Italy
36057
Giuseppe Baschirotto
Anna Albarello
info@lemalattierare.org
Website: www.lemalattierare.org
NORWAY
DEBRA Norway
Violveien 10D
Hakadal
Norway
1487
Heidi Silseth
heidi@debra.no
Website: www.debra.no
POLAND
DEBRA POLSKA - Stowarzyszenie Debra Polska Kruchy Dotyk
ul. Slawka 5
40-833 Katowice
POLAND
Mr Przemyslaw SOBIESZCZUK
sekretariat@debra-kd.pl
GEN - Association for Children with Genetic Disorders
Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi
Okrezna 6 Krzyszkowo
62-090 Rokietnica
POLAND
Ms Hanna MACIEJEWSKA
gen@gen.org.pl
WSPOLNIE - Association for children with rare genetic disorders
and their families "Together"
Katedra Genetyki - Akademii Medycznej im. Piastow Slaskich
Akademii Medycznej im. Piastow Slaskich
Chalubinskiego 3
50-369 Wroclaw
POLAND
Dr Robert SMIGIEL
stowarzyszenie@wspolnie.org
PORTUGAL
Núcleo de Epidermólise Bolhosa - Fundação LIGA
NEB - Núcleo de Epidermólise Bolhosa
Rua do Sítio ao Casalinho da Ajuda
1349-011 Lisboa
PORTUGAL
Dr Maria Guida DE FREITAS FARIA
lpdmcrs@lpdm-crs.pt
Debra PT - Associação Portuguesa de Epidermólise Bolhosa
Apartado 042088; EC TELHEIRAS
1601-801 Lisboa
PORTUGAL
Dr Carla SÁ COUTO
borboletas.de.portugal@gmail.com
RUMANIA
DEBRA Rumania
Nicopole Street No 43-45
Brasov
Sanda Florian
sandaflorian.@yahoo.com
MiniDebra Romania
Amurgului Street 25, ap 20
401037 Turda
ROMANIA
Ms Erika BURCIU
klaudiacovaciu@yahoo.com
SLOVENIA
DRUSTVO DEBRA SLOVENIJA
DEBRA Slovenija
Motnica 3
SI-1236 Trzin
SLOVENIA
Ms Polona ZAKOSEK
info@debra-slovenia.si
Website: www.aebe-debra.org
SPAIN
The Spanish Epidermolysis Bullosa Association
c/Real, Conjunto Puertogolf, blq 4, 1ºC, 29660 Nueva Andalucía
29660 Marbella, Málaga
Spain
Nieves Montero
Evanina Makow
aebe@aebe-debra.org
Website: www.aebe-debra.org
Asociación DEBRA España
DEBRA España
Calle Jacinto Benavente, 12. Edificio Marbelsun I. Local 2
29601 Marbella
SPAIN
Mr Evanina MORCILLO MAKOW
info@debra.es
SWEDEN
Svenska Epidermolysis bullosa föreningen
Debra Sweden
Monica Wittboldt
Tvillinggatan 1 A
431 43 Mölndal
monica.wittboldt@glocalnet.net
Website: www.debra-sweden.org
Swedish Epidermolysis Bullosa Association
Svenska Epidermolysis Bullosa Föreningen
c/o Therese Svedjeskog, Svedje 772
860 35 Söraker
SWEDEN
Ms Therese SVEDJESKOG
tezzan6699@yahoo.se
SWITZERLAND
DEBRA Switzerland
Birkenweg 102
3123 Belp
SWITZERLAND
Tanja Pauli
Phone ++ 41 (0)31 879 14 88
debra@schmetterlingskinder.ch
Website: http://www.schmetterlingskinder.ch
THE NETHERLANDS
DEBRA Netherlands
Postbus 3160
3760 DD Soest
Netherlands
Yvonne Westheide-Sellies
info@debra.nl
Website: www.debra.nl
UNITED KINGDOM
DEBRA
Debra House, 13 Wellington Business Park, Dukes Ride
RG45 6LS Crowthorne
UK
John Dart
john.dart@debra.org.uk, debra@debra.org.uk
Website: www.debra.org.uk
The Ultra Rare Disease,Disorders & Disabilities Foundation
Sydenham
Belfast BT9 7AB
UNITED KINGDOM
Mr Terence HOEY
godferybrockgadd@urddad-foundation.org.uk
Genetic Disorders UK
GDUK - Genetic Disorders UK
199a Victoria Street
London SW1E 5NE
UNITED KINGDOM
Ms Caroline HARDING
hello@gduk.org
EUROPE
DEBRA
Debra House, 13 Wellington Business Park, Dukes Ride,
RG45 6LS Crowthorne
UK
John Dart
john.dart@debra.org
Website: www.debra-international.org