OIFE

Seasonal Greetings from OIFE

Dear friends & contacts of OIFE. It’s Christmas Eve in Switzerland and I’m taking a moment before family dinner to look back on the year that has passed. To be honest it has been 12 months of ups and downs in the OIFE. To start with the saddest part, it has been a challenging and…

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MEMBERS

Meet OIF Ghana

My name is Justina Yiadom-Boakye, a mother to a child living with Osteogenesis Imperfecta. I am also the founder and the current President of OIF-Ghana, who recently became a member of the OIFE. Though it might be difficult to give the exact number of people living with the condition here in Ghana, however, using the…

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STORIES

This is not a person

Mr. Pablo Ostarek from Spain has OI himself and is a film maker by profession. Now he has a new project, with the topic of overprotection, something many people with OI can relate to. We have asked him to tell us a little bit about his project and his intentions behind the film Esto no…

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MEDICAL

New video explaining OI

Check out the educational video about OI that the Swiss OI-organization Schweizerische Vereinigung Osteogenesis Imperfecta has created. The video explains the basics about OI as a collagen defect, diagnosis and treatment. It’s available in 2 languages: German: https://youtu.be/i44KElsuaPs French: https://youtu.be/GVZ_L1No7pg

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EDUCATIONAL

ECHO – Rare Bone Virtual Clinic Series

Physicians of all specialties, nurse practitioners, physician assistants, and other healthcare professionals with an interest in rare bone conditions are welcome to attend monthly case-based telementoring presentations and discussions. The webinars are primarily for professionals in the US, but professionals from other countries can also ask to join. Presented by OIFE’s partners the Osteogenesis Imperfecta…

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CONFERENCES

See, Hear, Smile! in Riga

From Friday 14th of June to Saturday 15th, Riga, Latvia was the place to be for the OI community. On Friday, the sun was shining, temperatures were high, people in the streets wore summer clothes and highly-needed sunglasses, stopping every now and then to appreciate the beauty of the city or some refreshments at a…

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CONFERENCES

Video lecture BI

One of the invited speakers at See, Hear, Smile was Suken A. Shah from Wilmington, Delaware, USA who gave a talk about basilar invagination (BI). Unfortunately dr. Shah could not come all the way to Latvia, so the talk was given via a video lecture. The video lecture of Dr. Suken A. Shah’s talk about…
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Participants of topical meeting See, Hear, Smile!CONFERENCES

Abstracts See, Hear, Smile!

A great topical meeting has come to an end. More than 82 people from 22 countries met in Riga, Latvia from June 14th – 15th to discuss and learn about eyes, ears and teeth of people with OI. The event had a lot of positive feedback already, and we feel we succeeded in creating an…

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MEDICAL

The Good2Go MyHealth Passport – now available for OI!

There is great news coming from Shriners Hospitals for children, Canada! On the other side of the Atlantic, a promising tool has gained increasing popularity and is likely to represent an important step further in both transitional care and patient empowerment worldwide: the Good2Go MyHealth Passport. Developed as an online tool, the MyHealth Passport is…

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