Epidermolysis Bullosa Dystrophic Dominant, Pretibial - Patient Associations

AUSTRIA

DEBRA Austria
Am Heumarkt 27/1
1030 Wien
Austria
Rainer Riedl
rainer.riedl@debra-austria.org

Website: www.eb-haus.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

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
Biedenkopf
Germany
D-35216
Netty Müller-Grosse
mueller-grosse@t-online.de

Website: www.ieb-debra.de

GREECE

Association of people with genetic disorders
Medical genetics, University of Athens,
Aghia Sophia Children's hospital
TO MELLON
Makrinitsas 16, Abelokipoi
115 22 Athens
Greece
Dr Helen Fryssira
info@tomellon.com.gr

Website: www.debra-croatia.com

HUNGARY

DEBRA Hungary
Maria u 41
Budapest
Hungary
H-1085
Prof. Sarolta Kárpáti
Orsolya Mesitsne Varga
debra@bor.sote.hu

karsar@bor.sote.hu
mesitsorsi@freemail.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

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 Espana
DEBRA Espana
Calle Jacinto BEnavente, 12. Edificio Marbelsun I. Local 2
29601 Marbella
Spai
Mr Evanina Morcillo Makow
info@debra.es

SWEDEN

Svenska Epidermolysis bullosa föreningen
Debra Sweden
Monica Wittboldt
Tvillinggatan 1 A
431 43 Mölndal
Sweden
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
CH-3123 Belp
Tanja Pauli
Phone +41 (0)31 879 14 88
debra@schmetterlingskinder.ch
Website: 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
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