European or International Networks - Member Groups

 A list of EURORDIS member organisations that are federations or networks on the European or international level.

 

Alfa Europe Federation eV (AEF)

Stockumer Str. 30
59354 - Werne
Germany
Tel: +49 2365 698 260
e-mail: alfa-eurofed@t-online.de
website: www.alphaeurope.eu
 
Cystic Fibrosis Europe
In den Dauen 6
53117 - Bonn
Germany
Tel: 49 228 98780 31
Fax: 49 228 98780 77
e-mail: info@cf-europe.info
website: www.cfww.org/cfe/
 
Debra International
Am Heumarkt 27/3
1030 Wien
Austria
Tel: +43 1876 4030
Fax: +43 1876 403030
e-mail: office@debra-international.org
website: www.debra-international.org/
 
European Alliance of neuroMuscular Disorders Associations (EAMDA)
Linhartova 1
1000 Ljubljana
Slovenia
Tel: +386 1 47 20 500
Fax: +35 621 3180 24
e-mail: info@eamda.eu
website: www.eamda.eu
 
European Association of Patient Organisations of Sarcoidosis (EPOS)
Uerdinger Str. 43
40668 - Meerbusch
Germany
Tel: +49 21 50 70 596 70
Fax: +49 21 50 70 596 71
e-mail: info@sarcoidosis.biz
website:www.sarcoidosis.biz
 
European Congenital Heart Disease Organisation (ECHDO)
Associate member
Kasinostrasse 66
52066 Aachen
Germany
e-mail: bvhk-aachen@t-online.de
website: www.echdo.org
 
European Chromosome 11Q Network
Ahornstrasse 13
D-85241 Hebertshausen
Germany
Tel: +49 81 31 27 33 87
Fax: +49 81 31 27 35 45
e-mail: info@11q.org
website: www.11q.org
 
European Dysmelia Reference Information Centre (EDRIC)
Associate member
Vantingevagen 16
260 91 FORSLOV
Sweden
e-mail: info@edric.eu
website: www.edric.eu
 
European Federation of Associations of Patients with Haemochromatosis
Associate member
4 rue Paul Demange
78290 Croissy sur Seine
France
Tel: +33 6 08 25 94 04
e-mail: efaph@club-internet.fr
 
European Gaucher Alliance (EWGGD)
Associate member
3 Bull Pitch, Dursley
GL11 4NG Gloucestershire
United Kingdom
Tel: +44 1453 54 9231
Fax: +44 1453 549231
e-mail: tanya@gaucher.org.uk
website: www.eurogaucher.org
 
Euro Ataxia - European Federation of Hereditary Ataxias
c/o Ataxia UK
Winchester House, Kennington Park
Cranmer Road
GB-SW9 6EL London
United Kingdom
Tel: +44 20 75 82 1444
e-mail: smillman@ataxia.org.uk
website: www.euro-ataxia.eu
 
European Myeloma Platform
EMP Office
Mrs. Sonia Goossens
Laarbeeklaan 101
B- 1090 Brussels
Belgium
Tel: +32 2 476 31 06
Fax: +32 2 477 62 10
e-mail: EMP-office@uzbrussel.be
website: www.emp-myeloma.eu
 
European Network for Ichthyosis (ENI)
In den Dellen 21
51515 - Kürten
Germany
Tel: +49 2207 84 98 69
e-mail: europe@ichthyose.de
website: www.ichthyose.de/
 
European Network for Rare and Congenital Anaemias (ENERCA)
Associate member Hospital Clinic I Provincial
Unitat d’Eritropatologia
Villarroel 170 esc. 4 pl.
ES-08036- Barcelona
Spain
Tel: +34 93 451 59 50
Fax: +34 93 227 54 51
e-mail: enerca@enerca.org
website: www.enerca.org
 
European Network for Research on Alternating Hemiplegia (ENRAH)
Tivoligasse 70/10
A-1120 - Wien
Austria
Tel: +43 1 920 00 75
Fax:
e-mail: ts@enrah.net
website: www.enrah.net
 
European Haemophilia Consortium (EHC)
Rue du Luxembourg, 22-24,
1000 Brussels
Belgium
Tel: +32 2 761 6627
Fax: +43 2231 66 011
e-mail: info@ehc.eu
website: www.ehc.eu
 
European Society for Phenylketonuria (ESPKU)
Celebeestraat 12
2585 - TJ Den Haag
Netherlands
Tel: +31 652011696
website: www.espku.org
 
European Polio Union (EPU)
Walvisstraat 32
2018 - Antwerpen
BELGIUM
Tel: +353 87 2029830 or +32 2 687 26 21
e-mail: chairman@ppsg.ie or margret@trexim.be
website: www.europeanpolio.eu
 
European Waldenström Macroglobulinemia Network (EWM network)
Associate member
Iepenlaan 10
5248 AK Rosmalen
Netherlands
Tel: +31 73 521 76 43
Fax: +31 73 522 4071
e-mail: moom@planet.nl
website: www.waldenstrom.eu
 
Fabry International Network (FIN)
Associate member
Boelenkamp 10
NL-8431 BI Oosterwolde (FR)
Netherlands
Tel: +31 516 523773
e-mail: ericaschenk@hetnet.nl
website: www.fabryintnetwork.com
 
Federation of European Scleroderma Associations (FESCA)
Associate member
Rue Marcel Baudry
7503 Froyennees
Belgium
Tel: +32 20 8965 4094
website: www.fesca-scleroderma.eu
 
Federation of European Williams Syndrome (FEWS)
Tervuursesteenweg 30
3001 - Heverlee
Belgium
Tel: +32 16 224232
Fax: +32 16 224232
e-mail: paul.pyck@advalvas.be
website: www.eurowilliams.org
 
HAEI International Patient Organization for C1 Inhibitor Deficiencies
Lindeparken 33
DK-6230 Roedekro
Denmark
Tel: +45 31 591 591
e-mail: henrik.boysen@hae.dk
website: http://www.haei.org
 
International Patient Organization for Primary Immunodeficiencies - (IPOPI)
Firside
Main road
Downderry
Torpoint
PL11 3LE - Cornwall
United Kingdom
Tel: +44 1503 250 668
Fax: +44 1503 250 668
e-mail: info@ipopi.org
website:www.ipopi.org
 
International Waldenstrom’s Macroglobulinemia Foundation (IWMF)
Associate member
3932 Swift Road
34321 6541 Sarasota, Florida
United States
Tel: +1 941 927 4963
Fax: +1 941 927 4467
e-mail: info@iwmf.com
website:www.iwmf.com
 
Hypoparathyroidism Europe (HPTH Europe)
Associate member
Hotlsgata 33
IC-101 Reykjavik
Iceland
Tel: +35 4564 02 38
e-mail: gudrunruth@internet.is
 
European Society for Phenylketonuria (ESPKU)
Celebeestraat 12
2585 - TJ Den Haag
Netherlands
Tel: +31 652011696
website: www.espku.org
 
Myeloma Euronet - European Network of Myeloma Patient Groups
Associate Member
Brunnenstrasse 178/179
10119 Berlin
Germany
Tel: +49 30 28 87 97 55
Fax: +49 30 28 87 97 66
e-mail: info@myeloma-euronet.org
website: www.myeloma-euronet.org
 
NepcEurope Foundation
Associate member
p/a Raaigras 12
2411 DW bodegraven
Netherlands
+31 172 617 635
e-mail: mvanmeel@casema.nl
website: www.nephcure-international.org
 
Osteogenesis Imperfecta Federation Europe (OIFE)
Sturzstrasse 17
D- 96049 Bamberg
Germany
Tel: +49 951 60 3316
Fax: +49 31 84 719 0961
e-mail: office@oife.org
website: www.oife.org
 
Pulmonary Hypertension Association Europe (PHA Europe)
Associate member
Wilhelmstrasse 19
AT-1120 Wien
Austria
Tel: +43 1 402 37 25
e-mail: info@phev.de
 
SIOP Europe - SIOPE, the European Society for Paediatric Oncology
Associate member
avenue E. Mounier 83
1200 Bruxelles
Belgium
Tel: +32 2 775 29 34
e-mail: edel.fitzgerald@ecco-org.eu
website: www.siope.eu
 
SMA EUROPE
Im Moos 4
79112 Freiburg im Breisgau
Germany
Tel: +49 7665 94470
e-mail: info@initiative-sma.de
website: www.sma-europe.net
 
Thalassaemia International Federation (TIF)
31 Ifigenias Street, 3rd Floor
2007 Nicosia
Cyprus
Tel: +357 22 319 129
Fax: +357 22 314 552
e-mail: thalassaemia@cytanet.com.cy
website: www.thalassaemia.org.cy
 
The European Myasthenia Gravis Association(EuMGA)
Associate member
the College Business Centre, Uttoxeter New Road
DE22 3WZ Derby
United Kingdom
Tel: +44 1332 290219
Fax: 44 1332 293641
e-mail: eumga@mga-charity.org
website: www.eumga.eu
 
 

Page created: 12/02/2010
Page last updated: 22/11/2011