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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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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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Welcome to newly founded ISCBH!

The ICCBH are now the International SOCIETY of Children’s Bone Health, and they are ready to accept members! The International Society for Children’s Bone Health is a scientific society dedicated to achieving the best bone health for every child across the globe through research, education, collaboration and advocacy. Emerging from the long-running ICCBH they are…

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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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