Interview with Professor Gerard Pals, biochemist (MSc) and geneticist (PhD) at the VU university hospital in Amsterdam, The Netherlands Who are you and what is your relationship to OI? I am a biochemist (MSc) and geneticist (PhD). In 1989 I started a diagnostic laboratory for DNA and protein testing of inherited diseases, including OI, at…
Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization. The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…
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…
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…
One or two times a year, members of OIFE’s Executive Committee attend the Council of European Rare Disease Federations (CEF) in EURORDIS. On November 26th and 27th Ingunn and Bruno attended the Zoom-meeting, where more than 90 people from all over Europe took part. Topics included Rare Disease Week 2021, ERNs, Access to therapies, EU…
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…
