CONFERENCES

OIFE Investigator Meeting – a success

On the 17th of November 2023, OIFE hosted the second Virtual OIFE Investigator Meeting for the OI research community. 273 people from 48 countries signed up and more than 160 individuals attended the online event. Attendees were a mix of health professionals, scientists, OI clinicians and a lower number of representatives from industry and patient…

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ADVOCACY

Bilbao conference on ERNs and rare diseases

On October 11th EU leaders and key policymakers gathered in Bilbao, Spain, for the Conference on Rare Diseases and the European Reference Networks taking place under the Spanish EU Council Presidency. Discussions addressed some of the main challenges facing the EU policy framework on rare diseases, explored the future of the European Reference Networks (ERNs),…

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MEDICAL

New members in ERN BOND

On 1 January 2022, 620 new members will join the European Reference Networks, as unanimously approved by the ERN Board of Member States. As a result of the current call there will be nearly 1,500 ERN units in 27 Member States and Norway. The European Reference Network on Rare Bone Disorders (ERN BOND) suffered to…

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ADVOCACY

Being a patient representative (ePAG) in ERN BOND

Interview with Rebecca Tvedt Skarberg, member of European Patient Advocacy Group (ePAG) The European Reference Networks (ERNs) are 24 virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on rare diseases that require highly specialised treatment. One of these networks is the European Reference Network for Rare Bone Diseases (ERN-BOND). ERN-BOND has…

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EVENTS

OIFE in panel debate on ERNs

The company EuropaBio has invited the OIFE President to represent the patient organizations at the upcoming Patient Bio-Forum on October 19, 2021 (11.00-12.30 CEST). In the upcoming edition of the forum, the focus will be on the challenges and opportunities of the 24 European Reference Networks (ERNs), which include “our own network” – ERN BOND…

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ADVOCACY

ERN Exchange Programmes

We have important information for professionals working with rare bone conditions who belong to a healthcare provider in the European Reference Network for Rare Bone Diseases (ERN BOND). Get involved in the new Exchange Programme! And check out the ERN Research Mobility Fellowships! ERN Exchange Programme The European Commission funded the ERN Exchange Programme 2020-2022…

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EDITORIALS

Enough is Enough! Speech from Rare2030

This text was originally given as a keynote speech by Rebecca Tvedt Skarberg at the Rare2030 conference in February 2020. It was later published as the editorial in OIFE-Magazine 1-2020.  “It has been a great honour to be a part of Rare2030. Building tomorrow’s roadmap for rare diseases is a project close to my heart, simply…

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ADVOCACY

Covid-19 Helpline in Orphanet Journal

Patient involvement in ERN BOND Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice…

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