Survey on pregnancy & family planning

Do you think there should be more information or education on contraception & OI, on pregnancy & OI, on preimplanation genetic diagnosis (PGD), on breastfeeding or other issues related to pregnancy or family planning? Then now is your chance to tell the decision makers! The European Reference Networks including ERN BOND – European Reference Network…


OI & fracture risk after pregnancy

Interview with Emilie Karense Lykking, newly graduate doctor from University of Southern Denmark I am a newly graduate doctor from University of Southern Denmark, who found interest in OI during my final year of Med. School. At the moment I am working at the department of endocrinology at Bispebjerg Hospital in Copenhagen. I wrote my…


Announcement on the clinical trial BOOSTB4

In Sweden, the Karolinska Institutet and the Karolinska University Hospital are leading the academic clinical trial BOOSTB4 where we are looking for subjects who have a diagnosis of OI Type III or severe Type IV with a specific collagen mutation. The aim of the clinical trial is to study the safety and efficacy of the…


Covid-19 Helpline in Orphanet Journal

Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…


Women’s health & OI

WOMEN’S HEALTH AT OIF CONFERENCE Did you know that Women’s health is one of the topics which will be covered at the upcoming online conference of the Osteogenesis Imperfecta Foundation? The speaker is Dr. Deborah Krakow, MD – Professor and Chair, Obstetrics and Gynecology, UCLA. The session is designed specifically for women over 18 who have…

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