ADVOCACY

OIFE at Black Pearl Awards

On 24 February 2025 in Brussels – EURORDIS hosted their Black Pearl Award show, where they announced the final winners of the 14th edition of the Black Pearl Awards, celebrating the extraordinary individuals, organisations, and companies driving progress for people living with a rare disease. Stephanie Claeys from the OIFE Board was invited as a guest…

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OIFE

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

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