MEDICAL

Heart & lung risks in adults with OI

Interview with Robert A. Sandhaus, MD, PhD, FCCP, respirologist at National Jewish Health in Denver, Colorado Who are you & what is your relationship to OI? I’m Robert A. Sandhaus, MD, PhD, FCCP, although my patients call me Dr. Sandy. I’m a respirologist at National Jewish Health in Denver, Colorado where I lead a team…

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Registry Research in Denmark

My name is Lars Folkestad. I am an associate professor and staff specialist at the department of endocrinology at Odense University Hospital. There I am part of the team that follows and cares for adults with OI. We are aiming towards a multi-disciplinary approach to our outpatient OI clinic visits, but most of our efforts…

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MEDICAL

A Roadmap to Surgery in OI

Interview with Ralph J.B. Sakkers, MD, PhD, Paediatric Orthopaedic Surgeon, Department of Orthopaedic Surgery, University Medical Center Utrecht, The Netherlands & Simona Paveri and Leonardo Panzeri, Italian OI-association As.It.OI What was the purpose of the project “Roadmap to Surgery in OI”? Dr. Sakkers: Purpose of the project Roadmap to Surgery in OI was to create…

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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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MEDICAL

New members in ERN BOND

On 1 January 2022, 620 new members will join the European Reference Networks, as unanimously approved by the ERN Board of Member States. As a result of the current call there will be nearly 1,500 ERN units in 27 Member States and Norway. The European Reference Network on Rare Bone Disorders (ERN BOND) suffered to…

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MEDICAL

Pain & OI Project reestablished

OIFE wants to focus more on pain & OI, since this is reported to be the most important challenge for people with OI besides fractures. Because of the IMPACT survey we had to postpone our pain project until 2022. But now we have reestablished our OIFE project on Pain & OI. What has happened? In…

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Announcement on the clinical trial BOOSTB4

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…

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ADVOCACY

The European Registry for Rare Bone & Mineral Conditions (EuRR-Bone)

Interview with Natasha Appelman-Dijkstra M.D. Ph.D., Leiden University Medical Center (LUMC), Netherlands Who are you and what is your relationship to OI? I am Natasha Appelman-Dijkstra internist-endocrinologist in Leiden University Medical Center and specialized in Bone and Mineral Disorders and thus treating patients with OI. I have worked in the Leiden University Medical Center (LUMC)…

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MEDICAL

OI-registries in the USA

In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about OI-registries in the USA. In Europe we are developing the EuRR-Bone – which OI-registries do you have in the US? There is a contact registry with ca 2500 individuals signed up, which is sponsored by the…

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