ADVOCACY

OIFE needs patient representatives

Are you interested in research & policy work? As a European umbrella organization, we are more and more often asked to recruit patient representatives for research projects related to OI. This includes both clinical research and basic research. OIFE therefore needs to recruit and educate more people who can represent the voices of people with…

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ADVOCACY

Brussels Rare Disease Week 2021

OIFE is looking for someone who could represent us at the Brussels Rare Disease Week 2021. Would you like to apply for the position as our representative?  When? Brussels Rare Disease Week (RDW) will take place during the week of 22 February 2021 in Brussels, organized in the lead-up to Rare Disease Day 2021 (28 February). What?…

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EDITORIALS

The time is now

For a number of years treatment of OI was mostly limited to bisphosphonates, surgical interventions and physiotherapy. Well basically it still is, if you think of approved and standardized treatment (if such a thing exists in OI). The group of drugs called bisphosphonates actually celebrates its 50th anniversary this year. And for the last 25-30…

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EDUCATIONAL

The EURORDIS Open Academy

OIFE is a member of the rare disease umbrella organization EURORDIS. At least four of OIFE’s patient representatives have graduated from EURORDIS Summer School, but we are always interested in recruiting more patient experts. Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise…

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