Ordinary members

Only national organizations for OI in Europe can become ordinary members of OIFE. Ordinary members appoint a representative (with substitutes) who is the contact point for OIFE during the year and who has a vote at the General Assembly.

Osteogenesis Imperfecta Austria

Eva Sacherer
austria@oife.org

Zelhulp Osteogenesis Imperfecta vzw

Stephanie Claeys
belgium@oife.org

Dansk Forening for Osteogenesis Imperfecta

Malene Sillas Jensen
denmark@oife.org

The Finnish Osteogenesis Imperfecta Association

Teresia Harri
finland@oife.org

Association de l’Ostéogenèse Imparfaite

Jean Moitry
france@oife.org

arasrulyofili osteogeneziT daavadebulTa daxmarebis asociacia ‘SuSis bavSvebi’

Davit Burjanadze
georgia@oife.org

Deutsche Gesellschaft für Osteogenesis Imperfecta – Betroffene

Andrea Kiel
germany@oife.org

Associazione Italiana Osteogenesi Imperfetta – AS.IT.O.I.

Simona Paveri
italy@oife.org

Latvijas Osteogenesis Imperfecta Biedrība (LOIB)

Dace Liepina
latvia@oife.org

Vereniging Osteogenesis Imperfecta

Taco van Welzenis
netherlands@oife.org

Norsk Forening for Osteogenesis Imperfecta

Inger-Margrethe Stavdal Paulsen
norway@oife.org

Stowarzyszenie Osób z Wrodzona Lamliwoscia Kosci (O.I.) – Polska

Aneta Gałązka
poland@oife.org

Associação Portuguesa de Osteogénese Imperfeita

Céu Barreiros
portugal@oife.org

Asociaţia Română de Osteogenesis Imperfecta

Christian Florin Dănănău
romania@oife.org

Хрупкие люди ‘Fragile Children’

Elena Meshcheryakova
russia@oife.org

Asociacion Nacional Huesos de Cristal Espana

Julia Piniella Martín
spain@oife.org

Sveriges Förening för Osteogenesis Imperfecta (SFOI)

Henrik Karlsson
sweden@oife.org

Schweizerische Vereinigung Osteogenesis Imperfecta SVOI

Nadja Kreisser
switzerland@oife.org

Ukrainian Association of Crystal People

Lyubov Petrova
ukraine@oife.org

Brittle Bone Society – BBS

Patricia Osborne 
uk@oife.org

Associate members

National OI-organizations outside Europe can become associate members. Associate members appoint a representative (with substitutes) who is the contact point for OIFE during the year, but does not have a vote at the General Assembly.

Osteogenesis Imperfecta Society Australia

Amanda Reimann
australia@oife.org

Associação Nacional de Osteogenese Imperfeita (ANOI)

Henrique Benincaza dos Santos
brazil@oife.org

Canada Osteogenesis Imperfecta Society (COIS)

Stephanie Jacinta Whyte
canada@oife.org

Fundación de Osteogénesis Imperfecta Chile (FOICH)

Andrea Medina
chile@oife.org

China Dolls

Zhang Xiaoli
china@oife.org

Zero One

Sun Yue (Luna Sun)
zeroone@oife.org

Fundacion Ecuatoriana de Osteogenesis Imperfecta

Lucia Travez
ecuador@oife.org

Osteogenesis Imperfecta Foundation Ghana

Justina Yiadom – Boakye
ghana@oife.org

Indian Osteogenesis Imperfecta Foundation (IOIF)

Archana Ravindra Palahalli
india@oife.org

“Patients with Rare Bone Diseases”

Assem Dossanova
kazakhstan@oife.org

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

Elisa Ruiz Salva
mexico@oife.org

Osteogenesis Imperfecta Foundation Nigeria

Tarela Aghanti
nigeria@oife.org

OI Panamá

Jesús Camilo Osorio Barahona
panama@oife.org

Asociación Osteogénésis Imperfecta del Perú

Isis Atuncar
peru@oife.org

Brittle Bones South Africa

Rageema Livingstone
southafrica@oife.org

Osteogenesis Imperfecta Foundation

Tracy Hart
usa@oife.org

Supporting members

Any national or international organization related to osteogenesis imperfecta who doesn’t fit into the other categories can become a supporting member. OIFE has two types of supporting members at the moment – research foundations and aid organizations helping individuals in developing countries.

Research foundations

Aid organizations

NGO

Kate Armstrong
clan@oife.org

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