OIFE EXECUTIVE COMMITTEE
Ingunn Westerheim and Ida Männistö have been re-elected respectively as President and 2nd Vice President of OIFE for the next 4 years.
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…
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…
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…
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…
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…
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…
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…
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…