EDUCATIONAL

The EURORDIS Open Academy

OIFE is a member of the rare disease umbrella organization EURORDIS. At least four of OIFE’s patient representatives have graduated from EURORDIS Summer School, but we are always interested in recruiting more patient experts. Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise…

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RESEARCH

Physical Function & Soft Tissue Health in OI

Interview with Dr. Alex Ireland and Dr. Sergio Orlando Who are you and what is your relationship to OI? My name is Dr Alex Ireland, Senior Lecturer in Physiology at Manchester Metropolitan University, UK. My research has previously focused on how the shape and structures of our bones and joints is affected by physical activity…

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RESEARCH

Publish clinical trials!

The European Commission (EC), the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) have co-signed a letter reminding all sponsors of clinical trials conducted in the European Union of their obligation to make summaries of results of concluded trials publicly available in the EU Clinical Trials Database (EudraCT). The OIFE supports this…

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CONFERENCES

Patient Outcomes

Many people & projects are talking about patient outcomes & outcome measures these days. Today at the #iccbh2019 there was a poster presentation from Australia which reported that 1782 different outcome measures were used in 19 different trials about OI. This big variety makes it challenging to compare research across borders and between projects. We…
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CONFERENCES

New European Rare Bone Network

Yesterday OIFE was happy to co-host the establishing meeting of a multistakeholder rare bone network together with Hypophosphatasie Deutschland e.V. and ANDO Portugal with the kind support of the European Calcified Tissue Society – ECTS and the ICCBH-conference. The background for the initiative was among others connected to OIFE’s project ‘A stronger BOND between us‘.…

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RESEARCH

Webinar on registries

Registries was one of the main topics at OIFE AGM. Mr. George Reynolds (photo) gave a talk about the status on OI-registries in Europe and what will be needed in the future. Patient registries represent a fundamental pillar upon which a number of critical activities are based to understand patient experiences and outcomes, as well…

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MEDICAL

OIFE at MOCA-meeting

The European Medicines Agency and EU healthcare payers continued their cooperation this week at a meeting in Diemen, the Netherlands, to help improve timely and affordable access for patients to new medicines. Margriet Crezee from the Netherlands represented OIFE to talk about the patient perspective. Topics on the agenda included evidence generation for orphan medicines,…

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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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