Flyer describing conferenceEVENTS

OI Conference in Bologna

Would you be interested in attending a conference about patient engagement in OI research in Bologna, Italy? The conference takes place on June 13th 2024. It is organized by the consortium Remedi4All in collaboration with OIFE, As.It.OI (Italian OI-association), ERN BOND (European Reference Network on Rare Bone Diseases) and EURORDIS (Rare Diseases Europe). Tickets are…

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EDUCATIONAL

Patient Journey vs. Care pathways

Patient Journeys are service improvement tools that capture the natural history of a rare condition and the needs of patients through the day-to-day experiences and life-lens of people living with a condition. We were four people from OIFE who attended the webinar on patient journeys organized by EURORDIS on March 20th. You can find most…

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EDITORIALS

When obstacles become opportunities

By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…

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ADVOCACY

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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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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