Keratinization Disorders - Patient Associations

INTERNATIONAL

Foundation for Ichthyosis and Related Skin Types (FIRST)
2616 North Broad Street
Colmar, Pennsylvania 18915
info@firstskinfoundation.org
http://www.firstskinfoundation.org


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

AUSTRIA

Ichthyosis Support Group Austria
Philippine Welser Str. 80a
6020 Innsbruck
alexander.weller@chello.at

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.

Ichthyosis Belgium npa
Vestinglaan 12 - 2
Antwerpen
Belgium
B-2640
Jean Devidts
ichthyosis@devidts.com

Website: http://www.devidts.com/ichthyosis
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.

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

GERMANY

Ichthyosis Support Group Germany
Straße der Einheit 5d
Mittenwalde Brusendorf
Germany
15749
Barbara Kleinow
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
Website: www.ichthyose.eu

ITALY

AISMME Associazione Italiana Sostegno Malattie Metaboliche Ereditarie Onlus
Italian Association for the Study of Inborn Errors of Metabolism
Via Niccolò Tommaseo, 67-C
Padova
Italy
35131
President Cristina Vallotto
Vice President Manuela Pedron
info@aismme.org

Website: www.aismme.org
Note: this association is primarily intended for patients affected by Refsum disease and X-linked ichthyosis.

"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

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

Website: http://fundaluce.org
Note: this association is primarily intended for patients affected by Refsum disease.

SWEDEN

Iktyosföreningen
Swedish Ichthyosis Association
c/o Gånemo
Gånarpsvägen 335
Munka Ljungby
266 92
Agneta Gånemo
ab.ganemo@lm.lrf.se

Website: www.iktyos.nu
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.

Ichthyosis Support Group
PO Box 1404
Bagshot
UK
GU22 2LS
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.