The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions. 40 people attended face to face and 13 online. In addition to several…
The hybrid workshop “Patient priorities in ERN BOND beyond Quality of Life” is organised by ERN BOND – European Reference Network on Rare Bone Diseases and their patient representatives (ePAGs). It will take place on Saturday 6th of May from 9 – 4PM CET. This workshop aims to explore four priorities identified for patients with…
Interview with Professor Amaka Offiah, University of Sheffield and honorary consultant pediatric radiologist at Sheffield Children’s Hospital Who are you and what is your relationship to OI? I work as a professor at the University of Sheffield, employed by the University of Sheffield but I am also an honorary consultant pediatric radiologist at Sheffield Children’s…
Dr. Lidiia Zhytnik is a post-doc researcher at UMC Amsterdam, The Netherlands and a member of OIFE’s Medical Advisory Board. She has been part of a team who made a narrative review to systematize novel insights into OI genetics, reproductive options, family planning, decision-making and ethical issues. The team aimed to fill the existing gaps…
Interview with Shannon Bonner, graduate student of genetic counseling at Baylor College of Medicine, Houston, Texas, USA Who are you & what is your relationship to OI? My name is Shannon Bonner and I am currently a graduate student studying genetic counseling at Baylor College of Medicine which is located in Houston, Texas. In the…
By Claudia Finis, mother with OI and Prof. Dr. Ralf Oheim, Chair of the National Bone Board at Universitäts-Klinikum Hamburg-Eppendorf, Germany Claudia: “I can still remember the time when I felt like a big whale on four wheels meandering through the world. A vague idea about the existence of my knees and permanent heartburn accompanied…
Interview with Leanne Baird, graduate of the University of Cincinnati Genetic Counseling Graduate Program Who are you & what is your relationship to OI? My name is Leanne Baird, and I am a recent graduate of the University of Cincinnati Genetic Counseling Graduate Program in the US. I have a passion for educating patients about…
I was seventeen the first time I attended an educational course about OI. It was primarily a course for adults of small children with OI, but Rebecca and I were nerdy enough to be interested in genetics, collagen and symptoms when we were 17, so we registered in any case. And it was at this course…
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…
