EVENTS

Report from ‘See, Hear, Smile!’

The title and graphic identity of the Latvia meeting Jean Moitry and I attended in Riga is a reference to the Chinese tale of the three monkeys. One of them doesn’t see, the second doesn’t hear and the third hides his mouth. This is an optimistic message because the meaning of the parable is that…

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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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OIFE

In Memory of Ida

We struggle to find the words to announce the death of OIFE’s 2nd Vice President Ida Männistö (30) from Finland. Ida passed away in her own home on October 19th 2019. Ida was curious, smart, fearless, engaged and never afraid of new challenges. She lived life to the fullest and we feel so very sad…

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OIFE

New OIFE volunteer

Who are you and what is your connection to OI? I am Julien Delaye, 26 years old, living in Belgium. Over the past seven years, I studied marketing, European Public Health, and more recently Public Policy and Administration, which took me to several places such as Denmark, the Netherlands, Finland and Ireland. A few months…

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MEMBERS

New OIFE member Ghana

We are happy to announce that the Annual General Meeting has voted in favor of accepting OIF GHANA as a new associate member of OIFE. We now have 35 member organizations in our umbrella. Osteogenesis Imperfecta Foundation Ghana was established in May 2017 and is led by chair Justina Yiadom-Boakye. In the article below you…

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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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