ADVOCACY

Bilbao conference on ERNs and rare diseases

On October 11th EU leaders and key policymakers gathered in Bilbao, Spain, for the Conference on Rare Diseases and the European Reference Networks taking place under the Spanish EU Council Presidency. Discussions addressed some of the main challenges facing the EU policy framework on rare diseases, explored the future of the European Reference Networks (ERNs),…

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ADVOCACY

Empowering patient advocates

We are excited to announce that EURORDS are taking applications for the School on Medicines Research & Development and the School on Scientific Innovation & Translational Research. Both schools will take place in-person on 3-7 June 2024 in Barcelona! Would you like to join? Applications will close on 27 October 2023. Are you wondering why empowering patient…

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ADVOCACY

A Union of Equality

On June 27 OIFE volunteer Rebecca Tvedt Skarberg represented EURORDIS at the EU Meeting “A Union of Equality: Disability Rights and Strategies”, which was a seminar on examples of how to reach equality by using strategies to realize the rights of persons with disabilities. In order to highlight and raise awareness of the EU strategy…

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ADVOCACY

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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CONFERENCES

OIFE at EURORDIS Meeting

Written by Lars Romundstad, OIFE volunteer from Norway  EURORDIS is the umbrella association for organizations for rare conditions in Europe. And the 26th and 27th of May 2023, OIFE was represented at the EURORDIS Membership Meeting in Stockholm.  Lars Romundstad, represented the OIFE together with Rebecca Tvedt Skarberg, who is also a Board member of…

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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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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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ADVOCACY

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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ADVOCACY

OIFE in Paris

From November 8-9 Ingunn and Renata attended the EURORDIS Council of Federations meeting in Paris. Inger-Margrethe S. Paulsen from NFOI also attended. Among the topics were access to treatments and the pharmaceutical legislation, information about Rare Disease Week and future funding options in research. There was also an update on the situation for people with…

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