There is a brutal war going on in one of OIFE’s member countries, and the last couple of days OIFE has received several questions from people who are concerned about the situation in Ukraine. Many are wondering if there is an OI-organization in Ukraine and how they can be of assistance to people with OI…
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…
November 9th and 10th OIFE was represented by Ingunn Westerheim at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field…
Have you seen that applications for the 2022 EURORDIS Summer School are open? OIFE have at least five people who attended Summer School before and who graduated as patient experts. Take your patient advocacy to the next level, and learn with EURORDIS – European Rare Diseases Organisation about an exciting range of topics – including…
Tell Ursula von der Leyen, the President of the European Commission, YOUR reason why Europe needs to take action for a better future for people living with a rare disease by 2030. It’s important that people with OI are also represented in this important campaign document, asking for a new European action plan for rare…
Large European health NGOs like EURORDIS – European Rare Diseases Organisation and European Patients’ Forum play a pivotal role in advocating for and communicating the needs of the most vulnerable in society, whilst continually pressing for greater action in health policy at the EU level. OIFE totally support their work to restore the operating grants…
Rare Disease Week (RDW) is a brand new week-long series of events organized by EURORDIS which started February 22nd 2021. It included many webinars that targeted on rare disease patient advocates. The goal was to empower them with knowledge and skills so they can effectively participate in advocative activities at a European level and influence…
On February 23rd we were at least six people from the OIFE-community represented at the big Rare 2030 conference brilliantly hosted by EURORDIS. The conference had more than 650 participants attending live (online) and even more people following on streaming. The main purpose was to present the recommendations from the Rare2030 foresight study. These were…
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…
