ADVOCACY

Tell Ursula about OI!

Tell Ursula von der Leyen, the President of the European Commission, YOUR reason why Europe needs to take action for a better future for people living with a rare disease by 2030. It’s important that people with OI are also represented in this important campaign document, asking for a new European action plan for rare…

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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…

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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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STORIES

OI athletes at the Paralympics

The Spanish OI-organizations have identified many different athletes with OI who are competing in the ongoing Paralympics in Tokyo. The athletes come from Spain, Greece, The Dominican Republic, USA, Germany, Japan and Great Britain. We wish all the athletes best of luck! Below you can watch the campaign video #WeThe15 which was made to counter…

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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…

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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…

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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…

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Training with ballMEDICAL

Russia: Mobile Rehab Project

Read our interview with Nadezhda Epishina, M.D. and physical therapist Charitable Fund „Fragile people“ (Russian OI-organization) from Moscow, Russia. The interview was first published in OIFE Magazine 2-2021. Who are you and what is your relationship to OI? My name is Nadezhda Epishina. I am a doctor and a physical therapist. I have been engaged…

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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…

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