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

Norwegian registry for rare bone conditions

A new quality registry for rare bone conditions is being developed in Norway. It’s a collaboration between Oslo University Hospital (orthopedic dept.) and the Norwegian centre of expertise for bone conditions TRS kompetansesenter for sjeldne diagnoser. On May 7th an advisory board was established and Ingunn Westerheim & Rebecca Tvedt Skarberg (substitute) from OIFE were…

READ MORE
Tellef laughing at a beachRESEARCH

BOOSTB4 – stem cell therapy in OI

Interview with Anne Siqveland and Nicolai Wendt (parents of Tellef, 1 year old) Who are you and what is your relationship to OI? We are a Norwegian family of four, Anne (36), Nicolai (34), Edvard (4) and Tellef (1). Tellef was prenatally diagnosed with OI and his multiple fractures and mutation of COL1A2 gene place…

READ MORE
Logo rare disease day2021STORIES

Meet Jon-Kristian from Norway

In 2021 Jon-Kristian (12) will be one of the faces of Rare Disease Day – an annual international awareness day celebrated on the last day of February. Get to know all the faces of #RareDiseaseDay 2021 on this webpage. Jon-Kristian lives in Bergen, Norway. He loves doing e-sport and playing board games with his family.…

READ MORE
Translate ยป