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Rebecca Tvedt Skarberg

Rebecca Tvedt Skarberg

Osteogenesis Imperfecta Federation Europe (OIFE), Norway

Rebecca lives in Oslo, Norway. Her personal experience living with a rare condition comes from being born with osteogenesis imperfecta (OI).

She is a trained social worker with additional degrees in psychology and counseling. She has previously worked for the Norwegian National Welfare office (NAV). From 2014 Rebecca has worked for the Norwegian National Advisory Unit on Rare Disorders (NKSD). Her focus has been on strengthening patient involvement, strategy and planning of services for people with rare disease, as well as international issues. In 2022 she was head of the program committee for the Rare Disease Day Norway.

Rebecca started volunteering from an early age through the Norwegian OI Organization (NFOI) and The Norwegian Federation of Organizations of Disabled People (FFO).
Rebecca also been engaged in international volunteer work through Osteogenesis Imperfecta Federation Europe (OIFE). OIFE is an umbrella association for 37 OI organizations. OIFEs vision is for children and adults with OI to live active lives – with access to competent healthcare and necessary social support. OIFEs mission is to connect and empower organizations, professionals and individuals to improve lives of people with OI.

She was involved in the establishment of BOND ERN and was elected Epag when ERNs were launched in 2016. Rebecca has been part of the SC in BOND and has contributed in many working groups in the ERN . She attended EURORDIS Leadership school of 2019. She has been a part of the establishment of the EuRR-Bone registry from 2020, especially working on patient involvement. In 2019-2021 she served on the Rare2030 panel of experts.

e-mail: rebecca.tvedt.skarberg@oife.org

http://www.worldduchenne.org