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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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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MEDICAL

CPMS Platform for European Reference Networks (ERNs)

The Clinical Patient Management System platform aspires to accelerate diagnosis and treatment of rare diseases in the European framework European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe who aim to tackle complex or rare diseases and conditions. There are 24 ERNs involving 25 European countries and over 300 hospitals covering all…

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CONFERENCES

The Voice of People with OI

One of OIFE’s goals is to represent our members on an international level and be the voice of people with OI and their families. One of our representatives is Rebecca T. Skarberg. She is the voice of people with OI in the European Reference Network for Rare Bone Disorders (ERN-BOND), who had their annual technical…

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CONFERENCES

News about ERN-BOND

Rebecca Tvedt Skarberg (suggested OIFEePAG in ERN-BOND) attended the 4th Conference on European Reference Networks (ERNs) that took place in Brussels on November 22nd and 23rd 2018. “Think globally, act locally” was one of the messages from the conference. We all need to support and protect the networks to build sustainability and reach out to…

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EDITORIALS

The Voice of People with OI

February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…

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