RESEARCH

Research project need people between 18 and 25

Professor Kara Ayers from the US have three children of her own. Now she’s working together with the researcher Leanne Baird, who’s a genetic counseling student, to find out more about the role OI plays when young people are making future decision about having children. Kara and her student need young adults with OI aged…

READ MORE
OIFE

We did it together!

The Impact Survey is now closed! We are very happy to announce that with the tremendous help of organizations and individuals around the world, we reached our ambitious goal of more than 2200 responses from 66 countries! More details to come. Thank you to the Osteogenesis Imperfecta Foundation, to Wickenstones and Mereo Biopharma for support…

READ MORE
Logo Brittle Bone SocietyCONFERENCES

How to fill the knowledge gaps in OI

On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…

READ MORE
MEDICAL

The systematic spiral

How clinical work, registries, research, guidelines and quality improvement are connected Interview with Lena Lande Wekre, M.D. in the Skeletal dysplasia team at TRS National Resource Centre for Rare Disorders, Norway Who are you and where are you currently working? My name is Lena Lande Wekre and I am a Medical Doctor in the Skeletal…

READ MORE
RESEARCH

SISOM OI ASSESSMENT & COMMUNICATION TOOL

The research team at Shriners Hospitals for Children Canada just published “Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions” in the JMIR Pediatrics and Parenting. The people behind the article were Maia Siedlikowski, Lianna Curiale, Dr. Frank Rauch and…

READ MORE
RESEARCH

The TOPAZ Trial is recruiting adults with OI

The TOPAZ Trial is recruiting adults with OI in UK, Ireland, Netherlands, France and Denmark. The trial is designed to determine if anabolic therapy with Teriparatide (TPTD) followed by a single infusion of zoledronic acid (ZA) is superior to standard care in adults with OI. The trial is open to anyone over 18 years with…

READ MORE
Dr. Brendan LeeRESEARCH

Fresolimumab – a potential therapy for OI

In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about research on the potential therapy Fresolimumab (TGFb). Who are you and what is your relationship to OI? I am a pediatrician and clinical geneticist who has engaged in basic, translational, and clinical research in skeletal…

READ MORE
EuRRbone logoRESEARCH

Provide OI Data to e-Rec !

The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions. WHAT IS EURR-BONE? The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions)…

READ MORE
CONFERENCES

Call for abstracts for IntOI 2020+1

IntOI 2020+1: Virtual International OI Meeting Early-Stage Investigator Symposium September 9, 2021 | 11:00am – 4:00pm EDT (GMT-04:00) Chaired by Dr. Joan Marini of the National Institutes of Health, this is an interim International OI meeting pending the return of in-person meetings, with the postponement of the International OI meeting to 2022. The presentation focus…

READ MORE
Translate »