OIFE believes that all research projects affecting OI directly, should have some kind of patient involvement. The purpose is to ensure that our needs, concerns and expectations are properly addressed and considered in different phases of a project.

Individual people with OI can be represented by persons from the “patient community”, which covers individual patients, patient representatives, patient advocates and patient organisations. Sometimes a project needs the experience of a patient expert, which is a person who has undergone extensive training to learn about, their diagnosis (for instance at scientific conferences), research & development or about the healthcare system and policy work (registries, ERNs etc).

OIFE at Open Academy 2025

Also this year we had three participants at the EURORDIS-Rare Diseases Europe Open Academy in Barcelona from June 2-5. These included Alessandra Tolaccia (Italy), Penny Clapcott (UK) and Miguel Rodriguez (Spain).

The Open Academy accompanies patient advocates by offering rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners.

You can read a report from the event here.

A visit at San Joan de Deu Hospital

As part of the program, the participants of EURORDIS-Rare Diseases Europe Open Academy visited the Sant Joan de Déu Barcelona Hospital, which is a teaching hospital specializing in the fields of pediatrics, gynecology and obstetrics. It is known for having advanced technology and focus on research on children with OI and other rare conditions.

Read more about the hospital here.