Interview with Téa La, Community Development Officer for CLAN (Caring & Living As Neighbours) At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an…
My name is Isis Atuncar, I am from Peru, and I was diagnosed with OI when I was born in 1986. I had the opportunity to receive medication and surgical treatment in the USA. That treatment improved my quality of life. When we were back in Peru, my parents and other families together formed the…
My name is Ted Trahan. I am married to Sharon, and we have two adult children, Greg and Käthe. Greg has OI and we are excited to share that he is recently engaged to Natalie, who also has OI. I am one of the OIFE delegates of the associate member organization OIF in the USA.…
At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an Australian-based, not-for-profit, non-governmental organisation (NGO). Who is CLAN? CLAN was founded in 2004 and…
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…
