ADVOCACY

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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RESEARCH

Rare Disease Research Challenge

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries. On March 3rd Dace Liepina and Ingunn Westeheim was supposed to represent OIFE at a networking event in Paris related to the Rare Diseases Research (RDR) Challenges Call. We were particularly interested in challenge nr. 3 “Characterize Rare…

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ADVOCACY

New members of ERN BOND

The call for healthcare providers to join the 24 existing European Reference Networks closed in December 2019. A total of 841 applications for ERN membership were received. 29 applications were submitted for becoming a member of the ERN for rare bone diseases (ERN BOND). Please check the latest updates for the applicants on the EU…

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ADVOCACY

CEF-meeting in Brussels

On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The council also allow federations to work together 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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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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