From April 22-23 Alessandra Tolaccia represented OIFE at the first Multi-Stakeholder Meeting (MSM) organised by RealiseD dedicated to exploring “Rare and Ultra-Rare Disease Patient Enrolment in Clinical Trials”. The event was designed as a forum to reflect on, validate, and further develop the #RealiseD enrollment model, by bringing together perspectives from across the rare and…
OIFE has officially endorsed and signed the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases. OIFE proudly supports the Declaration launched at the High Level Meeting for Rare and Complex Diseases (HLM Rare) in December 2025. This important political and strategic commitment, co-created with patients, healthcare professionals, ERNs, academia and…
On September 12, 2025 OIFE has been represented by Alessandra Tolaccia at the symposium organized by the European Registries for Rare Endocrine and Bone Conditions. Good opportunities to learn what is going on in the world of registries and to network with leading OI- and rare bone experts.
From March 5-7, OIFE board member Alessandra Tolaccia was representing OIFE at the Re(Act) Congress in Brussels, Belgium. The congress covers different topics related to rare conditions including newborn screening, data sharing, advanced therapies and impacts of rare conditions on patients, families, and society. You can see the full program here. Organisers stressed that strong…
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,…
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),…
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…
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…
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…
