MEDICAL

The IMPACT Survey

The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey.  Written by…

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ADVOCACY

First OIFE Leadership Meeting

The European member organizations of OIFE virtually came together on February 1st to learn about what’s happening in pharmacological research and how the patient organizations in Europe can work nationally and on a European level to improve access to new and potential treatments for OI. In addition to the delegates, leaders from the European OI-organizations…

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OIFE at EMA Meeting on orphan drugs

On November 30th OIFE was represented at an interactive meeting about Orphan Drugs hosted by the European Medicines Agency (EMA). Orphan drugs are medicinal products intended for diagnosis, prevention or treatment of rare diseases. There are currently two designated orphan drugs being investigated in OI, the most known being setrusumab from Mereo Biopharma. Products for…

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ADVOCACY

OIFE at seminar on drug pricing

Can patient engagement foster access? On September 24th representatives from OIFE attended a very interesting webinar on pricing of rare disease drugs. It was called “How patient engagement can foster access through improved affordability” and included lectures from pharma companies, patient experts and health economists. The speakers raised a lot of important questions like: What…

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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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MEDICAL

OIFE at MOCA-meeting

The European Medicines Agency and EU healthcare payers continued their cooperation this week at a meeting in Diemen, the Netherlands, to help improve timely and affordable access for patients to new medicines. Margriet Crezee from the Netherlands represented OIFE to talk about the patient perspective. Topics on the agenda included evidence generation for orphan medicines,…

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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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