ADVOCACY

EuRR-BONE needs your input

The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) needs input from people with OI and other rare bone conditions to finalize their questionnaires directed towards patients. What are the most relevant aspects for people with OI? Which topics can be disregarded? There is also a separate survey asking for input from professionals who…

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MEDICAL

Key4OI – Past, Present and Future

Who are you and what is your relationship to OI? I am Dagmar Mekking from the Netherlands. I am a mother of a 15 year old daughter with OI. Also I am the director of Foundation Care4BrittleBones. The purpose of the foundation is to improve quality of life for people with OI through research. What…

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