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…
In January 2022 a new multidisciplinary (MDT) clinic for osteogenesis imperfecta was established in Ghana. We did an interview with the initiator and woman behind it – Mrs. Justina Yiadom-Boakye, the president and Founder of OIFE’s associate Member Ghana (OIF Ghana). Who are you and what is your relationship with OI? I am Mrs Justina…
“Yoga is a light, which once lit will never dim. The better your practice, the brighter the flame.” B.K.S. Iyengar (Yoga Guru) What exactly does yoga mean? Can anyone with OI practice yoga, no matter how limited their movement is? And how can yoga help in everyday life? Archana, the President of OIFE’s member…
On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…
Read our interview with Nadezhda Epishina, M.D. and physical therapist Charitable Fund „Fragile people“ (Russian OI-organization) from Moscow, Russia. The interview was first published in OIFE Magazine 2-2021. Who are you and what is your relationship to OI? My name is Nadezhda Epishina. I am a doctor and a physical therapist. I have been engaged…
The OIFE and the Brittle Bone Society are delighted to host the 2021 Youth Event (digital version). The theme is “Around the World!” From South America to Australasia. Along with a small team of travel mates, you will face challenges in each country, earning Travel Credits to purchase your onward journeys. Which team will cover…
