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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ADVOCACY

LAUNCH OF EURR-BONE

Today was the official launch & kickoff of the the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone), which is funded by the European Union’s Health Programme. OIFE was represented by Rebecca Tvedt Skarberg (ERN BOND ePAG). EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI…

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ADVOCACY

OIFE at ECRD

On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…

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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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OIFE

Seasonal Greetings from OIFE

Dear friends & contacts of OIFE. It’s Christmas Eve in Switzerland and I’m taking a moment before family dinner to look back on the year that has passed. To be honest it has been 12 months of ups and downs in the OIFE. To start with the saddest part, it has been a challenging and…

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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

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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EVENTS

OIFE AGM 2019

The See, Hear, Smile conference was followed by OIFE’s Annual General Meeting (AGM) from June 15th – 16th in Riga, Latvia. In addition to the business part of the meeting, we also shared good examples between our member organizations. Dr. Eva Åstrøm from Sweden gave an update on ERN BOND and the company Mereo Biopharma…

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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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