MEDICAL

Family planning amoung young adults with OI

Interview with Leanne Baird, graduate of the University of Cincinnati Genetic Counseling Graduate Program Who are you & what is your relationship to OI? My name is Leanne Baird, and I am a recent graduate of the University of Cincinnati Genetic Counseling Graduate Program in the US. I have a passion for educating patients about…

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Two children sitting on the groundEDITORIALS

To have or not to have … children

I was seventeen the first time I attended an educational course about OI. It was primarily a course for adults of small children with OI, but Rebecca and I were nerdy enough to be interested in genetics, collagen and symptoms when we were 17, so we registered in any case. And it was at this course…

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OIFE Educational Webinar 2022

The second part of OIFE’s annual meeting on June 4th 2022 was an educational webinar open to anyone. And a diverse group of ca 80 participants including OIFE-people, clinicians, researchers, industry people and other interested individuals came together to hear about news from the international OI-community. News from OIFE, ERN BOND & others The first…

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OIFE

OIFE AGM 2022

On Saturday June 4th we were ca 35 people representing 18 member organizations, who came together for OIFE’s Annual General Meeting (AGM) 2022 on Zoom. The agenda included:  Internal news & updates Approval of OIFE’s Annual Report 2021 Approval of financial report 2021 Dissolution of OIFE 1 in the Netherlands because OIFE 2 has been…

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YOUTH

Our trip to Bruges

OIFE Youth Event 2022 (part 1) took place in the Belgian city Bruges (Brügge) from May 5th to 8th after the last two events were cancelled due to the pandemic. The event was organized by the OIFE Youth Coordinators and the Belgian OI-organization ZOI. And how did it go? Read all about it in this…

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Join OIFE’s Educational Webinar June 4

We invite you to attend the annual OIFE Educational Webinar on June 4th from 13.30 – 17.00 CET (11.30 – 15.00 Universal Standard Time), which will take place online on Zoom. The webinar includes news about projects and activities from OIFE, patient advocacy education, news from OI-research & development and exchange and updates between OIFE’s…

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Join OIFE’s AGM 2022

Are you a member of one of OIFE’s member organizations? Then you can join our Annual General Meeting (AGM) on Zoom.  OIFE’s Annual General Meeting 2022 part 1 (the formal business part) will take place via Zoom on June 4th from 11-13PM Central European Time. The AGM provides an opportunity for the Executive Committee (EC)…

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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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Inclusion Project for Students with OI

Interview with Jessica Chemtov, Kinesiology student and Galil Osman, Occupational Therapy student; both at McGill University in Montreal, Canada   We both came to learn about OI through our respective disciplines. We are research trainees of Dr. Argerie Tsimicalis who is an Associate Professor at McGill University and a Nurse Scientist at the Shriners Hospitals…

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