Interview with OIFE Representative Rageema Livingstone, Representative of OIFE’s Associate Member South Africa Who are you and what is your relationship to OI? My name is Rageema Livingstone and I live with my husband and 3 kids in a suburban area of Cape Town South Africa. I have a 16 year old daughter with type…
Interview with Andrea Medina, Representative of OIFE’s Associate Member Chile Who are you and what is your relationship to OI? I’m the founder and chairwoman of the board of Fundación de Osteogénesis Imperfecta Chile (FOICH). I have OI myself, and that is why my interest was born in creating an organization that brings together people with…
In September 2022 we met two OI-professionals from Kazahkstan at the Sheffield OI conference. This was dr. Assem Dossanova and her husband professor Dossanov (photo on the right), who is one of the central orthopaedic surgeons in the Asian country, with a small percentage of the country situated in Europe. The couple told us that…
By Jennifer Cowley, Representative of OIFE’s Associate Member Australia My name is Jennifer (Jenny Cowley). I have Type 1 OI and so have 13 of my family members. I represent the Osteogenesis Imperfecta Society of Australia as the newly elected President. OI affects me personally by slowing me down when I get older. When I…
Interview with Jacinta Whyte, President and Chair of COIS (Canadian Osteogenesis Imperfecta Society) The Canadian OI-organization became an associated member organization of OIFE in October 2022 and we are very happy to welcome them to our international OI-community. Who are you and what is your connection to OI? My name Is Jacinta Whyte and I…
On October 19th the Interim Board of OIFE made the decision to include the Kazakhstan group “Patients with rare bone diseases” as an associate member organization. We wish our friends from Kazakhstan (Central Asia) a warm welcome to our international network. OIFE now include 39 member organizations around the world. 20 in Europe, 15 outside…
On October 18th the Interim Board of OIFE made the decision to include the Canadian Osteogenesis Imperfecta Society (COIS) as an associate member organization. We wish our Canadian friends a warm welcome to our international network.
Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization. The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…
Interview with María Barbero, Founder and President of Padrinos-OI Padrinos-OI is a non-profit organization (and supporting member of the OIFE) that originally provided sponsorships with the aim of helping individual patients with OI where medical care would otherwise be impossible. Now Padrinos-OI only works with national organizations that ensure the framework conditions for professional medical…
