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The IMPACT Survey has a new home!

Launched in time for Wishbone Day 2024, the new IMPACT Survey website helps to raise awareness of osteogenesis imperfecta by capturing the lived experience of the condition, as told by people with OI, their caregivers and close relatives. On the IMPACT Survey website, you will be able to find out more about this landmark survey and…

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JARDIN – The new EU Joint action

EU Joint Action on Integrating ERNs* into National Health Systems (JARDIN) *ERN: The key European network leveraging diagnosis, research, and treatment for rare diseases It was at the formal kick-off meeting in Brussels in March 2024 where the purpose and ambitions of JARDIN were further detailed, and where the European Commissioner for Health and Food Safety,…

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OIFE AT EFPIA PATIENT THINK TANK

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…

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Get to know EUCAPA!

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…

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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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EU Disability (and parking) Card

In September 2023 the European Commission launched its legislative proposal for expanding the European Disability Card across the EU, to ensure access to a range of services under preferential conditions for EU citizens with disabilities.  EURORDIS (European Rare Diseases Organisation) welcomed the proposal as an “important step in the right direction”, but not without also…

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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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Other rare bone conditions than OI – MO

Interview with Liana la Forgia, volunteer and a member of the scientific board of A.C.A.R. Aps, the Italian patient association for Multiple Osteochondromas (MO) OIFE has for many years had a project called “A stronger BOND between us”. The goal behind the project is to further develop an informal network between different stakeholders working on…

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