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…
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…
Today Ingunn Westerheim from OIFE represented the rare disease patient organizations at a panel debate called the Patient Bio-Forum, organized by the company EuropaBio. This edition of the forum focused on the challenges and opportunities of the 24 European Reference Networks (ERNs), which includes “our own network” the ERN BOND – European Reference Network on…
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…
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…
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…
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…
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…
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…
