RESEARCH

OIFE at the EMA

On July 9th 2019 the OIFE was represented by our honorary member Taco van Welzenis in a meeting at the European Medicines Agency (EMA). The EMA is an agency of the European Union in charge of the evaluation and supervision of medicinal products. They used to be located in London, but has recently moved to…

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EVENTS

Happy Birthday ASITOI !

OIFE was present at the 35th Associazione Italiana Osteogenesi Imperfetta Onlus anniversary during the Annual National Meeting and Congress. Anna Rossi also gave a speech about OIFE activities and projects! Happy Anniversary ASITOI! Check out the photos from the 35th anniversary of our Italian friends in Associazione Italiana Osteogenesi Imperfetta Onlus! Looks like a great…

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MEDICAL

New video explaining OI

Check out the educational video about OI that the Swiss OI-organization Schweizerische Vereinigung Osteogenesis Imperfecta has created. The video explains the basics about OI as a collagen defect, diagnosis and treatment. It’s available in 2 languages: German: https://youtu.be/i44KElsuaPs French: https://youtu.be/GVZ_L1No7pg

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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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