CONFERENCES

OIFE at Re(act) Congress

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…

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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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