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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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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RESEARCH

Publish clinical trials!

The European Commission (EC), the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) have co-signed a letter reminding all sponsors of clinical trials conducted in the European Union of their obligation to make summaries of results of concluded trials publicly available in the EU Clinical Trials Database (EudraCT). The OIFE supports this…

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CONFERENCES

Networking in Brussels

OIFE had several representatives in Brussels attending the 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies (https://www.eurordis.org/3rd-access-symposium) in February 2019. During the conference there were also opportunities to network. Here with representatives from Open App, Bindeweefsel.Be and Mereo. What was interesting to know? Our Honorary Member Taco van Welzenis gives an…

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