ADVOCACY

Can you help us create good registries?

Why do we need registries for OI? Several new drugs are being investigated for OI at the moment. If some of these end up on the market, it will be important to develop registries to monitor potential side effects and long term effects of these drugs. Registries are also important when it comes to learning…

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ADVOCACY

OIFE input for EU research

What do you think are the most pressing challenges that EU funded research and innovation should tackle for the rare disease community? The European Commission is preparing the implementation of Horizon Europe, the next EU research and innovation programme (2021-2027) with a budget of €100 billion, in an intensive co-design process. As part of the…

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CONFERENCES

OIFE at China-Dolls Conference

From August 3rd – 6th 2019 the Chinese OI society (China-Dolls) celebrated their 10th anniversary in Yantai in the east of China. They organized a medical conference two days before the meeting. During this conference three international experts (Dr. Frascini from Italy, Dr. To from Hong Kong and Dr. Semler from Germany) gave lectures and…

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Participants of topical meeting See, Hear, Smile!EVENTS

Presentations from See, Hear, Smile!

OIFE’s Topical Meetings usually take place approximately every third year. The purpose of the events is to create an arena where interested professionals and experienced specialists from all over the world can meet and exchange knowledge and experience on a specific OI-related topic. From June 14th – 15th around 85 people from 22 countries met…

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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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