By Natalia V, OIFE Board member OIFE was represented at the 5th European Symposium on Transition in the beautiful city of Paris. The event took place from the 25th to 26th of September 2025. The Symposium was attended by 200 people, from 20 countries. An event that takes place every two years and has been…
The IMPACT Survey is a successful collaboration between OIFE, Osteogenesis Imperfecta Foundation and Mereo. It investigated the economic, clinical, and humanistic challenges of OI on affected individuals, caregivers, and the broader community. Now the first article on OI caregivers has been published. As described on the latest paper from IMPACT: Improved support is needed for…
Are you a parent of one or more children or adolescents with OI? Would you like to help the OIFE with focus groups and panels hosted by researchers, companies or other stakeholders working to improve care and treatment for children with OI? Can you communicate in English? OIFE is more and more often asked to find parents…
Unsolicited advice for non-disabled parents of disabled children By Haley Brown, artist from the US Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND…
Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head. OIFE recommends the publication “Guide for parents after diagnosis” to parents after they…
Dr. Madhuri’s team starts stem cell therapy in children in India We are pleased to inform you that we have initiated the stem cell therapy for children with Osteogenesis imperfecta under the Indo – Swedish collaboration, funded by DBT, India and VINNOVA, Sweden at Christian Medical College, Vellore. We have treated a patient severely affected…
Interview with Anne Siqveland and Nicolai Wendt (parents of Tellef, 1 year old) Who are you and what is your relationship to OI? We are a Norwegian family of four, Anne (36), Nicolai (34), Edvard (4) and Tellef (1). Tellef was prenatally diagnosed with OI and his multiple fractures and mutation of COL1A2 gene place…
![[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]](https://oife.org/wp-content/uploads/2021/11/Haley-Brown-illustration-877x470.png)
