OIFE

In 2021 we made an impact together!

Dear members of the international OI-community!  In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…

READ MORE
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…

READ MORE
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…

READ MORE
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…

READ MORE
EuRRbone logoRESEARCH

Provide OI Data to e-Rec !

The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions. WHAT IS EURR-BONE? The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions)…

READ MORE
RESEARCH

Norwegian registry for rare bone conditions

A new quality registry for rare bone conditions is being developed in Norway. It’s a collaboration between Oslo University Hospital (orthopedic dept.) and the Norwegian centre of expertise for bone conditions TRS kompetansesenter for sjeldne diagnoser. On May 7th an advisory board was established and Ingunn Westerheim & Rebecca Tvedt Skarberg (substitute) from OIFE were…

READ MORE
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…

READ MORE
OIFE

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

READ MORE
MEDICAL

COVID-19 – info for people with OI

The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 See also more resources about Covid19 in English from…

READ MORE
Translate »