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OIFE at EURORDIS Summer School

The EURORDIS Open Academy School on Medicines Research & Development (Summer School) aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015, researchers are also welcome to attend the School. Also this year people connected to OIFE were attending EURORDIS Summer School…

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OIFE supports manifesto of inclusive future

The European Parliament of Persons with Disabilities (EPPD) was a one-day event on May 23, 2023 that reunited over 600 disability advocates, policymakers and other stakeholders. It was hosted at the hemicycle of the European Parliament in Brussels. The theme of the 5th edition was “Building an inclusive future for persons with disabilities in the…

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OIFE in Bologna

The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions. 40 people attended face to face and 13 online. In addition to several…

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ERN BOND Workshop on Patient Priorities

The hybrid workshop “Patient priorities in ERN BOND beyond Quality of Life” is organised by ERN BOND – European Reference Network on Rare Bone Diseases and their patient representatives (ePAGs). It will take place on Saturday 6th of May from 9 – 4PM CET. This workshop aims to explore four priorities identified for patients with…

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OIFE at Nordic Rare Disease Summit

In April 2023, for the second time, the Nordic Rare Disease Summit brought together decision makers, healthcare professionals, patient organizations, media, academia and life science companies to elevate rare diseases as a priority area in the Nordic countries. The Summit is a platform for policy discussions and the exchange of good ideas. OIFE’s president Ingunn…

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EUCAPA – more Patient involvement

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…

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Photo of Ursula von der Leyen, European Commission PresidentADVOCACY

Call for European strategy on rare diseases

On Rare Disease Day, 48 Members of the European Parliament (MEPs) wrote to the President of the European Commission, Ursula von der Leyen, calling on her to deliver a comprehensive European strategy on rare diseases.  The goal is to improve the lives of the 30 million European citizens living with a rare disease. The letter…

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EURR-BONE Final Meeting

On February 13th we were four representatives from OIFE who attended the final meeting of the EuRR-Bone registry as a 3 year old project. Claudia Finis attended face to face and Taco van Welzenis, Rebecca Tvedt Skarberg and Ingunn Westerheim attended online. The project team in Leiden have delivered on all their milestones, and has…

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OIFE IN THE EU PARLIAMENT

On February 8th a European Parliament event took place, hosted by Member of Parliament (MEP) Frédérique Ries and organised in collaboration with EURORDIS. The event was in the framework of Brussels Rare Disease Week 2023, to reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people…

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