Keratinization Disorders - Patient Associations

INTERNATIONAL

Foundation for Ichthyosis and Related Skin Types (FIRST)
PO Box 1067, Lansdale, PA 19446
info@firstskinfoundation.org
https://www.firstskinfoundation.org

Pachyonychia congenita project
2386 East Heritage Way, Suite B
Salt Lake City, UT 84109
info@paychyonychia.org
www.pachyonychia.org

BELGIUM

 

ELA Belgium (European Leukodystophie Association - Belgium)
25 rue de Haneffe
Verlaine
Belgique
4537
Gael de Miomandre
gdm@ela.be
Website: www.ela.be
Note: this association is primarily intended for patients affected by Refsum disease and other Leukodystrofies.

FINLAND

Finnish Central Organisation for Skin Patients
Karjalankatu 2 B, 3rd floor
00520 Helsinki
Finland
harvinaiset.ihosairaudet@iholiitto.fi

GERMANY

Ichthyosis Support Group Germany
Straße der Einheit 5d
Mittenwalde Brusendorf
Germany
15749
Kirstin Kiekbusch
Geske Wehr
europe@ichthyose.de
Website: www.ichthyose.de
Note: this association is primarily intended for patients affected by all forms of keratinization disorders except for Hailey-Hailey disease, Darier disease and pachyonychia type 1 and 2.

e n i
European Network for Ichthyosis e. V.
In den Dellen 21
51515 Kürten
Germany
e-n-i@gmx.de
 

ITALY

"M. Baschirotto" Association for rare diseases (ONLUS)
via B. Bizio,1, Costozza di Longare
Vicenza
Italy
36057
Giuseppe Baschirotto
Anna Albarello
info@lemalattierare.org
 

UNITI - Unione Italiana Ittiosi
Viale Vasco de Gama, 72
00121 Roma
Italia
Flavio Minelli
flavio@ittiosi.it
Website: www.ittiosi.it
Note: this association is primarily intended for patients affected by all forms of keratinization disorders except for Hailey-Hailey disease, Darier disease and pachyonychia type 1 and 2.

SPAIN

Fundaluce, Fundación Lucha Contra La Ceguera
Fundaluce, Spanish Fighting Blindness Foundation
Montera 24 4º J
Madrid
Spain
28013
Jose María Casado
Andrés Mayor
Andres@retinosis.org
Note: this association is primarily intended for patients affected by Refsum disease.

SWEDEN

Iktyosföreningen/Swedish Ichthyosis Association
Box 1386, Landsvägen 50a
S-172 27 Sundbyberg
SWEDEN
Contact: Helene Reuterwall
helene.reuterwall@iktyos.se
Website: www.iktyos.se
Note: this association is primarily intended for patients affected by all forms of keratinization disorders except for Hailey-Hailey disease, Darier disease and pachyonychia type 1 and 2.

UNITED KINGDOM

Liz Dale
isg@ichthyosis.org.uk
Website: www.ichthyosis.org.uk
Note: this association is primarily intended for patients affected by all forms of keratinization disorders except for Hailey-Hailey disease, Darier disease and pachyonychia type 1 and 2.