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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EVENTS

OIFE Youth Event – Registration is open!

The OIFE Youth event will take place between 23rd to 27th, October 2019 in Bilbao, Spain. The goals of the OIFE Youth Event are: – sharing experience & ideas across borders – networking and getting to know young people with OI in other countries – social activities and fun – to create awareness about OIFE…

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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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CONFERENCES

The Voice of People with OI

One of OIFE’s goals is to represent our members on an international level and be the voice of people with OI and their families. One of our representatives is Rebecca T. Skarberg. She is the voice of people with OI in the European Reference Network for Rare Bone Disorders (ERN-BOND), who had their annual technical…

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CONFERENCES

Networking in Brussels

OIFE had several representatives in Brussels this week. Our Honorary Member Taco van Welzenis attended the 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies: https://www.eurordis.org/3rd-access-symposium During the conference there were also opportunities to network. Here with representatives from Open App, Bindeweefsel.Be and Mereo. You can see a recording of the whole…

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EVENTS

OIFE Youth Event 2018

By Lars Nesset Romundstad, Translation: Ingunn Westerheim From October 25th to 28th 2018 Kristian and I traveled from Norway to Århus in Denmark to attend the annual OIFE Youth event. The traditional youth event took place in the Pindstrup Centre and was organized by the Danish girls Malene, Ninna, Matilde and Marie, who’s one of…

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EVENTS

Training for Young Patient Advocates

The European Patient Forum is happy to share with you an exciting opportunity for the 3rd edition of the Summer Training for Young Patients Advocates. The theme of 2019 is ‘Shaping the Future of Patient Advocacy’. Over the course of four days, young people will be expanding their skills and maximize their leadership potential. The…

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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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STORIES

My voluntary work in Ghana

I am Stefanie Ritzrow, 19 years old and just graduated from school this year. I have OI type IV and use a wheelchair as, I cannot walk. My biggest passion is traveling and I always wanted to combine that with being a helpful hand and experiencing more than a normal holiday. In December 2017 the…

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