Members of the OIFE

FULL MEMBERS

BELGIUM-FLANDERS
Zelfhulp Osteogenesis Imperfecta vzw
Belgian Flemish Website

Address: mevr. Boyen Hilde, secretariaat
Schoolstraat 3, 3440 Budingen ph: +32.11.58.2348
e-mail: zoi_info@zoi.be

OIFE delegate: Filip de Gruytere
e-mail: Belgium-vla@oife.org

BELGIUM-FRANCOPHONE
Association Francophone Belge de l'Ostéogenčse Imparfaite
Belgian Francophone Website

Address: AFBOI
Avenue Marcel Thiry 60/04, B-1200 Bruxelles
ph: +32.2 772 50 82
e-mail: afboi.asbl@gmail.com

OIFE delegate: Christine Coppin
e-mail: Belgium-franc@oife.org

DENMARK
Dansk Forening for Osteogenesis Imperfecta
Danish Website

OIFE delegate: Niels Christian Nielsen
e-mail: Denmark@oife.org

GERMANY
Deutsche Gesellschaft für Osteogenesis Imperfecta - Betroffene
German Website
Brief History

Address: Deutsche Gesellschaft für Osteogenesis Imperfecta - Betroffenen e.V.
- Geschäftsstelle -
Bei den Mühren 82, 20457 Hamburg
Für Briefpost: Postfach 111908, 20419 Hamburg
ph: +49 40 / 6 90 87 - 200
fx:  +49 40 / 6 90 87 - 199
eml: info@oi-gesellschaft.de

OIFE delegate: Ute Wallentin, e-mail: Germany@oife.org
Sturzstrasse 15, D-96049 Bamberg
ph: +49.951.60.3316

FINLAND
Suomen Osteogenesis Imperfecta-Yhdistys
Osteogenesis Imperfecta-Föreningen i Finland / The Finnish Osteogenesis Imperfecta Association
Finnish Website
Brief History

Address: Secretary, Maija Karhunen: Pellavakaskenmäki 3 A 1, 02340 Espoo

OIFE delegate: Eero Nevalainen
e-mail: Finland@oife.org

FRANCE
Association Osteogenèse Imparfaite
French Website

Address: A.O.I., BP 20075, 80082 AMIENS CEDEX 2
fx: +33.322.66.8470
e-mail: info@aoi.asso.fr

OIFE delegate: Jacky Goineau
e-mail: France@oife.org

ITALY
Associazione Italiana Osteogenesi Imperfetta - AS.IT.O.I.
Italian Website
Members of the Italian Medical Advisory Board
Italian youth group

Address: Leonardo Panzeri, president
Via C. Monteverdi, 12, 23887 Olgiate Molgora - LC, Italy
ph        : +39 ( 0)39 509 470
mobile: +39 346 08 66 660

OIFE delegate: Paveri Simona
e-mail: Italy@oife.org
Via per Saronno 51, 20020 Introini loc. di Solaro (Mi), Italy
ph: +39.(0)2.960.9043
fx:  +39.(0)2.962.1325

NORWAY
Norsk Forening for Osteogenesis Imperfecta
Norwegian Website

Address: The Norwegian Osteogenesis Imperfecta Foundation, Postboks 4568, Torshov, 0404 Oslo
e-mail: nfoi@c2i.net

OIFE delegate: Trond Gĺrden
e-mail: Norway@oife.org
Toftveien 6, 8013 BODŘ, Norway
ph: + 47 75 56 40 38

The NETHERLANDS
Vereniging Osteogenesis Imperfecta - VOI
Dutch Website
Website alleen voor jongeren

Address: Vereniging Osteogenesis Imperfecta
van Loghemstraat 2a, NL-2033 XP Haarlem, The Netherlands
algemeen informatie nummer ph: +31-(0)23-5359946

OIFE delegate: Taco van Welzenis
e-mail: Netherlands@oife.org

SPAIN
Asociacion Nacional Huesos de Cristal Espana
Spanish Website

Address:AHUCE, C/ San Ildefonso 8, 28012 MADRID
ph: +34.91.467.8666
fx: +34.91.528.3258
e-mail: ahuce@ahuce.org

OIFE delegate:Carlos Trabal
e-mail: Spain@oife.org

PORTUGAL
Associaçăo Portuguesa de Osteogénese Imperfeita
Portuguese Website

Address:APOI, Rua Abel Manta, 5 - 2ş Dto, 2780-174 Oeiras
ph: 918625460 / 938260877
e-mail: a.p.osteogeneseimperfeita@gmail.com

OIFE delegate:Maria Céu Barreiros
e-mail: Portugal@oife.org

SWITZERLAND
Schweizerische Vereinigung Osteogenesis Imperfecta - SVOI
Association Suisse Osteogenesis Imperfecta - ASOI
Swiss website

Address: ASOI/SVOI, Marianne Jocham, Alpstr. 26, CH-9443 Widnau, Switzerland
ph: +41..71.722.72.54
fx: +41.71.722.72.34
e-mail: m.jocham@gmx.ch

OIFE delegate: Vanja Zivkovic
e-mail: Switzerland@oife.org
Kanalweg 26, CH 4800 Zofingen, Switzerland
ph: + 41.62.751.8472

SWEDEN
Riksförbundet för Rörelsehindrade Barn och Ungdomar, RBU
The Swedish National Association for Disabled Children and Young People(RBU)
RBU Website/OI
Brief History

Address: RBU, Box 8026, SE-104 20 Stockholm, SWEDEN
ph:+46.8.677.73 00
fx: +46.8.677.73 09
e-mail: info@riks.rbu.se

OIFE delegate: Carina Svenheden
e-mail: Sweden@oife.org

UNITED KINGDOM
Brittle Bone Society - BBS
BBS Website

Address: Grant-Paterson House, 30 Guthrie Street, Dundee DD1 5BS, Scotland
ph: +44.1382.204446/7
fx: +44.1382.206771
e-mail: bbs@brittlebone.org

OIFE delegate:Sam Renke
e-mail: UK@oife.org

ASSOCIATE MEMBERS

AUSTRALIA
Osteogenesis Imperfecta Society of Australia
Australian Website
Brief History & Report 30^th anniversary

OIFE delegate:Julie Stonestreet
e-mail: aus@oife.org
PH: +61 02 8735 6698
Mobile: +61 0407 6688 19

CROATIA
Hrvatska Udruga Osteogenesis Imperfecta (HUOI)
Croatian Website

Address: c/o Nevenka Kalac, Groznjanska 4, 52440 Porec
ph: +385.52.434.625
fx: +385.52.452.687

OIFE delegate: Marko Dzinic
e-mail: Croatia@oife.org

ECUADOR
Fundacion Ecuatoriana de Osteogenesis Imperfecta (FEOI)
Ecuadorian Website

OIFE delegate: Lucia Travez
ph: +593-2-243-9694
e-mail: ecu@oife.org

MEXICO
Angelitos de cristal, i.a.p.
Fundación mexicana para la atención de personas con Osteogenésis Imperfecta

Address:Angel Urraza 427, Col. Del Valle, C.P. 03100, Mexico, D.F.
ph: +52.55.55.75.39.87
Mexican Website

OIFE delegate:Hugo Ruiz
e-mail: mexico@oife.org

GEORGIA
arasrulyofili osteogeneziT daavadebulTa daxmarebis asociacia “SuSis bavSvebi” .
Georgia help association "GLASSY CHILDREN" for people affected by OSTEOGENESIS IMPERFECTA.
Georgian Website

Address: SAIRME st. IV BUILDING IV FLOOR. ROOM 10, TBILISI, Georgia.
ph    : + 995 32 29 42 89 or + 995 32 37 65 25
mob: + 995 99 38 10 94
fx     : + 995 32 37 65 25

OIFE delegate: Khatuna Saganelidze
e-mail: Georgia@oife.org

PERU
Asociación Osteogénésis Imperfecta del Perú
Peruvian website

Address: Calle Las Amapolas 264, Urb. Entel Perú - Lima 29 - PERU
ph: +51-1-450-1681 or +51-1-372-5213

OIFE delegate: Rosa de Chang
e-mail: Peru@oife.org

UNITED STATES of AMERICA
Osteogenesis Imperfecta Foundation (OIF)
OIF Website


Address: e-mail: bonelink@oif.org

OIFE delegate:Tracy Hart
e-mail: usa@oife.org

SUPPORTING MEMBERS

HOI FOUNDATION
Helping people with OI and their families
The idea is to provide help in emergency cases or in those cases where the regular channels fail.
We understand Dutch, English, German and some French.
HOI Website

Address:Stichting HOI, Oude Dijk 33, NL 9956 PA Den Andel (Gr.), The Netherlands.
ph/fx: +31.595.425668
mobile: +31.6.221.67875

Delegate: Hinke Panjer, Director
e-mail: hoi@oife.org

PADRINOS PROJECT
Godparents for OI-Children (In English)
Padrinos para nińos con OI (en Espagnol)
Paten für OI-Kinder (Auf Deutsch)

Address: Apartado de correos número 6, 43144 Vallmoll (Tarragona), Spain
ph: +34.977.607114

Delegate: Maria Barbero
e-mail: padrinos@oife.org

last updated 17 November 2007