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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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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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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Chronic pain in OIMEDICAL

Do you have knowledge on pain & OI?

OIFE is interested in getting in touch with professionals (PTs, OTs, psychologists, medical doctors, researchers, pain specialists etc) who have experience/knowledge about pain & pain management in OI (or related bone diseases). We are considering a mini conference and/or project related to pain & OI and we are interested in getting in touch with people…

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ADVOCACY

ERN Exchange Programmes

We have important information for professionals working with rare bone conditions who belong to a healthcare provider in the European Reference Network for Rare Bone Diseases (ERN BOND). Get involved in the new Exchange Programme! And check out the ERN Research Mobility Fellowships! ERN Exchange Programme The European Commission funded the ERN Exchange Programme 2020-2022…

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MEDICAL

A Quick jab and a glimpse of light

In Denmark some younger people with OI were prioritized to receive the COVID-19 vaccine. Read about the experiences from Jacob below.  Text written by Jacob Ø. Wittorff, member of DFOI All it took was a quick jab, and then it was over. I got my COVID-19 vaccine on a cold but sunny afternoon in January.…

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MEDICAL

OI Variant database

WHAT IS THE OI VARIANT DATABASE? Professor Raymond Dalgleish moved to the University of Leicester in January 1984 and set up a group to study the genetics of OI and vascular EDS. Since 1984 he has on a volunteer basis been systematically collecting all publications describing OI-causing sequence variants (mutations). At first the database was…

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MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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MEDICAL

COVID-19 survey for people with OI

As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community in the US and worldwide. The OIFE is supporting the project.  Help us know more! Please take a few minutes to complete this new survey today!…

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