CONFERENCES

3rd Ibero-American congress on OI

There will be a big Ibero-American congress on OI in Quito, Equador from October 16th – 18th 2019. There will be international lecturers from Canada, Spain, Colombia and Equador. Target group is both professionals as well as people with OI and their families. More information to be found in the conference webpage: https://www.feoi.org.ec/page/congreso2019

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MEMBERS

OIFE member China Dolls

Oliver Semler The Chinese organization China Dolls became an associate member of OIFE in December 2017. Since then we have been learning about the organization and the different activities they have. During spring 2019 we were very happy and honored to be invited to the 6th National Conference for People with OI in Yantai Shandong,…

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OIFE

New OIFE volunteer

Who are you and what is your connection to OI? I am Julien Delaye, 26 years old, living in Belgium. Over the past seven years, I studied marketing, European Public Health, and more recently Public Policy and Administration, which took me to several places such as Denmark, the Netherlands, Finland and Ireland. A few months…

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ADVOCACY

Rare2030 & OIFE at EURORDIS events 2019

Holistic and Integrated Care by 2030: EURORDIS Membership Meeting 2019 in Bucharest By Dana Andrei, OIFE Delegate Romania & Rebecca Tvedt Skarberg, OIFE delegate Norway and ERN BOND ePAG Black Pearl Events The Black Pearl Events took place on the 12th of February and Rebecca Tvedt Skarberg and her husband Knut Erik were invited to…

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RESEARCH

BOOSTB4 – study on stem cell therapy

Interview with Cecilia Götherström and Eva Åström Who are you? What is your profession and what is your relationship to OI? Cecilia Götherström: I’m a researcher who have explored the potential use of stem cells for treatment of OI and other diseases for almost 20 years. My “relationship” with OI started in 2002, and since…

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CONFERENCES

Symposium on stem cells & OI in India

Written by Eva Åström, member of OIFE Medical Advisory Board OI symposium in Vellore India The Centre for Stem Cell Research at the Christian Medical Collage in Vellore, India arranged a two day symposium on OI and stem cell treatment on the 6th – 7th of February 2019. The aim was to provide a platform…

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EDUCATIONAL

ECHO – Rare Bone Virtual Clinic Series

Physicians of all specialties, nurse practitioners, physician assistants, and other healthcare professionals with an interest in rare bone conditions are welcome to attend monthly case-based telementoring presentations and discussions. The webinars are primarily for professionals in the US, but professionals from other countries can also ask to join. Presented by OIFE’s partners the Osteogenesis Imperfecta…

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ADVOCACY

We need the UK in ERN BOND

OIFE is supporting the Genetic Alliance UK’s ProtectERNs campaign that calls on the UK government and the EU to secure the sustained involvement of the UK in European Reference Networks (ERNs) post Brexit. This is especially important for the network for rare bone disorders (ERN BOND), because they have a substantial number of UK healthcare…

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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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