EDUCATIONAL

TeleECHO RARE BONE DISEASES

Check out the TeleECHO series on rare bone diseases, which is a mix of lectures and case discussions. Previous sessions can be watched online, including: – Genetic Testing in the Diagnosis of Rare Bone Disease – OI Dominant vs Recessive: Impact on Treatment – Non-Accidental Trauma Link to the TeleECHO page of the OI Foundation…

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ADVOCACY

OIFE at MEDEV-MOCA-meeting

Taco van Welzenis represented OIFE at the videoconference in the MEDEV-MOCA-meeting which took place on May 26th. The setrusumab project of Mereo Biopharma was the topic (Mereo Biopharma). BPS-804 (setrusumab) is a fully human monoclonal antibody designed to inhibit sclerostin, thereby improving bone strength and therefore reduce fractures in patients with OI. It has been…

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ADVOCACY

OIFE at ECRD

On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…

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ADVOCACY

RARE 2030 Scenarios

The Rare2030 – Foresight in Rare Disease Policy is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. Rare2030 is a two…

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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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