Demystifying Clinical Trials: how they work and why they matter/ Patient Empowerment through education Are you a patient or a caregiver? Ever wonder how new medical treatments reach patients? This webinar is designed specifically for patients and caregivers who want to understand the science and decisions behind their care and become an active part in…
At the OIFE 2025 conference we had the pleasure of having Matt Bolz-Johnson from EURORDIS present as a speaker. And honestly we could not ask for a better contributor at our 2025 conference in Oslo! Matt Bolz-Johnson reminded us about the importance of including mental health in our advocacy for better care and services. He…
November 22nd we had the great pleasure of being invited as observers to the hybrid meeting of the Patient Think Tank of European Federation of Pharmaceutical Industries and Associations (EFPIA). We learned about the work of other European federations, hurdles and opportunities for how patient organizations can work with industry, medicine shortages and patient engagement…
The project EUCAPA aims at providing patients, and patient experts, with the adequate knowledge and skills to effectively participate in the Health Technology Assessment (HTA) process. Their courses are designed to empower participants to advocate for themselves and make their voices heard. This will be needed when future treatments for OI comes up for approval…
EURORDIS and partners have launched a major project to empower patient involvement in Health Technology Assessments: European Capacity Building for Patients (EUCAPA). EUCAPA is designed to train patients and their representatives in Health Technology Assessment (HTA) – the multidisciplinary and systematic process that evaluates the added value of a health technology in comparison to other…
On January 23rd the member organizations of OIFE were invited to the OIFE Leadership Meeting 2023. The purpose of the meeting was to inform the organizations about events and activities going on in the OIFE. The agenda included the following topics: News from OIFE incl. clinical trials Launch of OIF & OIFE pain survey EuRR-Bone…
The EUnetHTA was established to create an effective and sustainable network for health technology assessment (HTA) across Europe. EUnetHTA supports collaboration between European HTA organisations that brings value at the European, national, and regional level through: The facilitation of efficient HTA resource use. The creation of a sustainable system of HTA knowledge sharing. The promotion…
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…
On September 30th representatives from the OIFE attended a very informative webinar, which explored how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures. The webinar was organized by the foundation Findacure and the company HealX and explored the ways to…
