CONFERENCES

Report from Quality of Life 4 OI

OI is more than Fractures, Surgeries and Pain! As a currently-elected family representative by our regional OI-association comprising the states of Hessen, Saarland and Rheinland-Pfalz (Germany)-, I was honored to take part in the highly-anticipated conference ‘QUALITY OF LIFE 4 OI’ this year. The conference took place in Amsterdam from the 22nd-25th November 2019. This…

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CONFERENCES

Marie’s Youth Corner

Impressions from the “QualityofLife4OI” Conference I attended the QualityofLife4OI conference in Amsterdam last month. I wasn’t sure if it was a good idea to go, because I had to move apartment two days after the conference. Luckily I decided to go and it was such an amazing trip and I managed to pack my apartment…

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ADVOCACY

Rare2030

The Rare2030 Panel of Experts (nearly 200 key opinion leaders in rare disease policy) met in person for the first time in Brussels on November 7th to discuss trends in rare disease diagnostics, treatment, care and social support and how they may lead to future policy scenarios. Rebecca Tvedt Skarberg (ePAG in ERN BOND suggested…

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MEMBERS

Meet OIF Ghana

My name is Justina Yiadom-Boakye, a mother to a child living with Osteogenesis Imperfecta. I am also the founder and the current President of OIF-Ghana, who recently became a member of the OIFE. Though it might be difficult to give the exact number of people living with the condition here in Ghana, however, using the…

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ADVOCACY

CEF-meeting in Brussels

On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The council also allow federations to work together on…

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STORIES

This is not a person

Mr. Pablo Ostarek from Spain has OI himself and is a film maker by profession. Now he has a new project, with the topic of overprotection, something many people with OI can relate to. We have asked him to tell us a little bit about his project and his intentions behind the film Esto no…

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OIFE

In Memory of Ida

We struggle to find the words to announce the death of OIFE’s 2nd Vice President Ida Männistö (30) from Finland. Ida passed away in her own home on October 19th 2019. Ida was curious, smart, fearless, engaged and never afraid of new challenges. She lived life to the fullest and we feel so very sad…

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MEDICAL

14th ISDS Meeting in Oslo, Norway

The 14th International Skeletal Dysplasia Society (ISDS) meeting took place in Oslo, Norway from the 11th -14th September 2019. OIFE was not present, but we asked Dr. Antonella Forlino (see photo in report below), who’s a member of OIFE’s Medical Advisory Board to report back from the sessions that were most interesting for OI. On…

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ADVOCACY

ERNs – CALL FOR NEW FULL MEMBERS

From October 1st 2019 the European Reference Networks (ERNs) are opening a call for applications for new full members. The call is open until 30th of November 2019. The healthcare providers in Europe have two months from today to apply to become a member of one of the 24 ERNs, including ERN BOND which OI…

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