Wishboneday wheelchairEVENTS

Wishbone Day 2019

The international awareness day of OI – Wishbone Day is coming up in less than 2 weeks (on May 6th). Do you want to help us color the world yellow and spread awareness about OI, OIFE and the OI-community? Then try out our frame for your Facebook profile photo! Go to OIFE’s Facebook-page and click…

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EVENTS

OIFE AGM 2019

OIFE’s 26th Annual General Meeting (AGM) will be held in Riga, Latvia from June 15th – 16th following the topical meeting See, Hear, Smile! If you plan to take part in both the topical meeting and the OIFE AGM, you need to register for BOTH events separately. Time OIFE AGM: June 15th 14.30 – June…

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MEDICAL

Share your experience with treatments

HAVE YOU EVER RECEIVED TREATMENT FOR YOUR OI? Then OIFE & EURORDIS is interested in hearing from you. Take 10 minutes to complete the new #RareBarometer survey on your experience of rare disease treatments and share your views. Survey available here in 23 languages: http://bit.ly/eurordis-survey NOTE! New this time is that you don’t have to…

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MEMBERS

New OIFE member – Ukraine

Who are you and what is your relationship to OI? My name is Karina and I am mother to 8 year old girl with OI type 3. We live in Rovno, which is located in Western Ukraine. Can you tell us a few words about Ukraine? Ukraine is a country in Eastern Europe. It has…

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CONFERENCES

OIFE at Mereo

On January 22nd 2019 OIFE was invited to the pharmaceutical company Mereo Biopharma in London to talk about OI from the perspective of people who have OI themselves. OIFE was represented by Honorary Member Taco van Welzenis, who also talked about how the OI-community is organized and what is important for us in research and…

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OIFE AGM groupOIFE

25 years of OIFE – how it all began

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…

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EVENTS

Nigeria new OIFE-member

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…

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EVENTS

OIFE’s 25th Anniversary

“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…

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ECRD conference groupCONFERENCES

Vienna 2018 – EURORDIS, RDI & ECRD

Inger-Margrethe and Ingunn were so lucky to be able to represent NFOI and OIFE  in beautiful Vienna, Austria where they were joined by Rebecca Tvedt Skarberg (OIFE/ERN BOND) and Dace Liepina (OI Latvia – LOIB). André Wittwer and Knut Erik T. Skarberg were also there to keep the ladies company.  This is the report from…

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