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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CONFERENCES

OIFE in Barcelona

Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…

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CONFERENCES

The Voice of People with OI

Do you want help us establish the voice of people with OI? OI Community Sounding Board The organizers of the conference Quality of Life 4 OI in Amsterdam are assembling an OI Community Sounding board (webinar) to test the key messages from the OI community, which will be shared during the Amsterdam conference. This is…

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EDUCATIONAL

Registries in Rome

OIFE’s honorary member Taco van Welzenis recently attended the International Summer School on Rare Disease Registries and FAIRification of Data in Rome, Italy from Sep. 23rd – 27th 2019. It was a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). You can download the agenda…

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CONFERENCES

Join Quality of Life 4 OI!

Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam! The Conference organized by Foundation Care4BrittleBones together with OIFE, OIF, ERN-BOND and BBDC will provide a platform to engage on clinical practice and research aimed at increasing quality of life for people with OI. The conference discusses topics like…

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EDITORIALS

The time is now

For a number of years treatment of OI was mostly limited to bisphosphonates, surgical interventions and physiotherapy. Well basically it still is, if you think of approved and standardized treatment (if such a thing exists in OI). The group of drugs called bisphosphonates actually celebrates its 50th anniversary this year. And for the last 25-30…

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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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