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: infoalfa-eurofed [at] t-online [dot] 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 [at] cf-europe [dot] 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 [at] debra-international [dot] org
website: www.debra-international.org/
European Alliance of neuroMuscular Disorders Associations (EAMDA)
4, Gzira Road
GZR 04 - Gzira
Malta
Tel: 35 621 3466 88
Fax: 356 213 18024
e-mail: ritaborg [at] euroweb [dot] net [dot] mt
website: www.eamda.net
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 [at] sarcoidosis [dot] biz
website:www.sarcoidosis.biz
European Congenital Heart Disease Organisation (ECHDO)
Associate member
Kasinostrasse 66
52066 Aachen
Germany
e-mail: bvhk-aachen [at] t-online [dot] 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 [at] 11q [dot] org
website: www.11q.org
European Dysmelia Reference Information Centre (EDRIC)
Associate member
Vantingevagen 16
260 91 FORSLOV
Sweden
e-mail: info [at] edric [dot] eu
website: www.edric.eu
European Federation of Associations of Patients with Haemochromatosis
Associate member
1, boulevard Jeanne d’Arc
F-35000 - Rennes
France
Tel: 33 2 99 87 05 15
e-mail: efaph [at] club-internet [dot] 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 [at] gaucher [dot] org [dot] 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 [at] ataxia [dot] org [dot] 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 [at] uzbrussel [dot] be
website: www.emp-myeloma.eu
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 [at] enerca [dot] 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 [at] enrah [dot] net
website: www.enrah.net
European Haemophilia Consortium (EHC)
c/o Osterreicische Hamophilie Cresellshaft Mariahilfer
Gurtel 4
A-1060 - Vienna
Austria
Tel: 43 676 530 3500
Fax: 43 2231 66 011
e-mail: hartl [at] bluter [dot] at
website: www.ehc.eu
European Polio Union (EPU)
Walvisstraat 32
2018 - Antwerpen
BELGIUM
Tel: 32 3288 77 94
e-mail: Johan [dot] bijttebier [at] telenet [dot] 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 [at] planet [dot] 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 [at] hetnet [dot] 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 [dot] pyck [at] advalvas [dot] 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 [dot] boysen [at] hae [dot] 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 [at] ipopi [dot] 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 [at] iwmf [dot] 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 [at] internet [dot] is
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 [at] myeloma-euronet [dot] org
website: www.myeloma-euronet.org
Nephcure International
Associate member
p/a Raaigras 12
2411 DW bodegraven
NETHERLANDS
+31 172 617 635
e-mail: mvanmeel [at] casema [dot] 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 [at] oife [dot] 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 [at] phev [dot] de
website:
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 [dot] fitzgerald [at] ecco-org [dot] eu
website: www.siope.eu
SMA EUROPE
Im Moos 4
79112 Freiburg im Breisgau
Germany
Tel: 49 7665 94470
e-mail: info [at] initiative-sma [dot] de (info [at] initiative-sma [dot] 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 [at] cytanet [dot] com [dot] 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 [at] mga-charity [dot] org
website: www.eumga.eu
