EVENTS

OIFE YOUTH EVENT CANCELLED

Perhaps not a big surprise, but the OIFE Executive Committee has in collaboration with the local organizers decided to cancel the OIFE Youth Event 2020 that was supposed to take place end of August, because of the Corona virus situation. Our plan is to do the OIFE Youth Event in Poland i 2021 and in…

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ADVOCACY

OIFE AT EURORDIS AGM

On May 13th OIFE president Ingunn represented OIFE at the Annual General Meeting of EURORDIS – European Rare Diseases Organisation on Zoom, which was scheduled to take place in Stockholm followed by the ECRD-conference. We approved reports and voted for future plans, which includes many important initiatives, that will affect the lives and situations of…

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EVENTS

OIFE AGM on Zoom – a success

Each year all delegates are invited to the Annual General Meeting (AGM) of OIFE, which is normally the only time a year the whole Board comes together. At the AGM the Executive Committee (EC) accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exchange news and ideas. Our…

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OIFE

YOUR #WISH4OI 

The aim with our #wish4OI campaign was to collect the wishes of the OI community to get to know what they wish there could be more knowledge and awareness about in the future about OI. It could be anything from treatments to policy work, from very basic to complicated issues you want to address or…

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EVENTS

#tuesday takeover

On May 5th 2020 OIFE will be the host of the periodical #tuesdaytakeover organized by Rare Revolution Magazine.   Rare Revolution Magazine  Rare Revolution Magazine gives a voice – and a platform – to patients, industry professionals, clinical and healthcare providers and the patient groups and charities that support over 8000 different rare conditions. Created by…

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RESEARCH

Psychosocial research in OI

Psychosocial network & patient centered outcomes research Interview with Dr. Kara Ayers My name is Kara Ayers. I’m primarily connected to the OI community because I have OI (Type V) myself. My husband has OI as well and we were both fortunate to grow up with the benefits of being socially connected to others in…

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MEMBERS

New OIFE Member: FOICH CHILE

Interview with Andrea Medina, FOICH President Who are you and what is your relationship to OI? I am Andrea Medina, founder and president of the board of the Fundación de Osteogénesis Imperfecta Chile, FOICH. I have OI for this my interest is generating actions that allow other people with OI to develop in their lives,…

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EVENTS

Tell us your #wish4OI

Save the date! May 6th is Wishbone Day the International Day of OI celebrated all over the world by the OI communities to improve and boost the awareness around OI. We have seen many incredible ways to celebrate this day, some created by individuals and some guided by National organizations’ initiatives. As the international umbrella for…

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EVENTS

OIFE AGM ON ZOOM MAY 9TH

Each year all delegates are invited to the Annual General Meeting (AGM). Anyone from our member organizations can attend the AGM. In addition OIFE volunteers, volunteers from other organizations, professionals and other people with an interest in OIFE can be invited. At the AGM the EC accounts for OIFE’s activities in the past year, future…

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