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OIFE at Summer School on Registries

EuRR-Bone Registry Did you know that there is a European registry on rare bone disorders being developed? It’s called EuRR-Bone and has received funding from the EU. OIFE has two patient representatives involved in the development of EuRR-Bone including the disease specific module on OI. Summer School on Rare Disease Registries To become more knowledgeable…

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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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Posters from ECRD now available

The European Conference on Rare Diseases (ECRD) took place online from May 14th and 15th and ca 1500 people from 57 countries took part. Posters are now freely available at the ECRD webpage: https://www.rare-diseases.eu/posters/ Here you can read the impressions from some of the people who represented OIFE at the conference.

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New affiliated members of ERN BOND

On August 31st the inclusion of Affiliated Partners to ERN BOND was finalized. 16 centres from 10 countries are now part of ERN BOND as affiliated partners (not full members). Their expertise will support all the network’s activities and will facilitate the sharing of knowledge across the EU. Affiliated Partners should be ERN’s entry points as they improve the accessibility across the EU for patients…

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Brussels Rare Disease Week 2021

OIFE is looking for someone who could represent us at the Brussels Rare Disease Week 2021. Would you like to apply for the position as our representative?  When? Brussels Rare Disease Week (RDW) will take place during the week of 22 February 2021 in Brussels, organized in the lead-up to Rare Disease Day 2021 (28 February). What?…

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OIFE supports EU4Health campaign

On August 4th the OIFE joined EURORDIS and signed the EU4Health campaign “Europe, Let’s Do More for Health”. The campaign calls for targeted and effective EU action to ensure that everyone is able to enjoy healthy lives in healthy environments. The European organizations who has joined EU4Health call for an EU leadership that respects EU…

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OIFE at ECRD-conference

The European Conference on Rare Diseases (ECRD) was originally planned to take place in Stockholm in May. Because of the Corona virus, the conference was moved online to May 14th and 15th, which made it possible for more people from OIFE to attend. Five people represented OIFE specifically and you can read about their experiences…

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OIFE AT PATIENT ENGAGEMENT FORUM

This week representatives from OIFE attended two different online sessions connected to the Patient Engagement Open Forum, which is a series of virtual educational sessions on patient engagement. The Forum is hosted by PARADIGM, PFMD and EUPATI aims to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation…

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Data strategy for the ERNs

EuRR-Bone is launched! The registry EuRR-Bone was launched this week, and will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care…

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