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…
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…
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…
