The OIFE would like to bring your attention to a research study investigating cardiopulmonary outcomes and quality of life in adults with OI. The clinical examination part is only recruiting people from the USA. But the internet based questionnaire/survey is open for any person with OI 18 years of age or older as long as…
OI exists all over the world and the success story of the international OI community and the OIFE started on three continents at the same time more or less. But without the wonderful and easy exchange of knowledge and support that we can have today. As we all heard many times this year, everything began…
Who are you and what do you do? My name is I Ketut Budiarsa. I am a Balinese man from Kedewatan, Ubud, Bali, Indonesia. I am the head of Yayasan Cahaya Mutiara Ubud which is a foundation run by people with disabilities, for people with disabilities. I am an accomplished artist and an activist for…
Interview with Rubén Muñoz Cortés, psychologist of Fundación AHUCE Who are you? I am Rubén Muñoz Cortés. I live in Valencia, Spain. I am a psychologist with a Master’s Degree in Clinical Psychology and Neuropsychology. I am a PhD candidate in Clinical and Health Psychology at the University of Valencia. Throughout my career, I have…
The 2018 OIF National Conference, themed EXPLORE, gathered over 650 attendees and 50 speakers for a busy and memorable weekend in Baltimore, Maryland! The attendees of this summer’s conference represented seven countries and nearly forty US states. And on behalf of the OIFE I thank the OIF for the kind invitation to take part in…
If you think this editorial is going to be an OI-version of “Fifty shades of grey”, I have to disappoint you. It’s going to be about pain & and pleasure in a non-sexual way. And how those two can sometimes affect each other. Let’s start with the positive part. It was my great pleasure to…
At the Annual Meeting of OIFE in August 2018, we got a pleasant surprise – a membership application from the Nigerian OI-organization. The Board voted and we were happy to welcome OIF Nigeria as our new associate member, the second one from the African continent. The OI Foundation Nigeria, founded by Tarela Aghanti in March…
“An Anniversary is a time to celebrate the joys of today, the memories of yesterday and the hopes of tomorrow.” I would say this is pretty much what has happened in Dundee, Scotland from August 16th – 20th 2018 and not only for OIFE. Actually the whole weekend was a celebration of happiness and of…
There is a lot of information about osteogenesis imperfecta on the Internet. But how do you know where to find information that is good and up to date in your country or language? We recommend searching the OI-organizations for advice. Information in English can be found here: OIFE’s information about OI OIF’s Information Center BBS…
