Dr. Argerie Tsimicalis (RN, PhD, Nurse Scientist at Shriners Hospitals for Children Canada) and Ms. Jenny Wang (RN, M.Ed., PhD Candidate at McGill University) are looking for participants to help co-design an educational virtual reality (VR) game for children with OI! We are conducting an exciting new study to create a Virtual Reality (VR) tool…
Written by Miguel R. Molina, member of OIFE’s Medical Advisory Board Miguel R. Molina from our Medical Advisory Board represented OIFE at the meeting of the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) in Amsterdam on November 23rd 2023. The European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA)…
The ICCBH are now the International SOCIETY of Children’s Bone Health, and they are ready to accept members! The International Society for Children’s Bone Health is a scientific society dedicated to achieving the best bone health for every child across the globe through research, education, collaboration and advocacy. Emerging from the long-running ICCBH they are…
Physician statements on children with severe types of OI Dear colleague, In the literature there is very limited information on fracture incidence during the first years of life in children with OI type III and IV on early bisphosphonate treatment. We understand your busy schedule, but we would appreciate your quick input on the statement…
By Dace Liepina, former OIFE Vice President The iCAN (International Children’s Advisory Network) Summit 2022 took place in Lyon, France. It was an event for young people aged 12 to 19 from all around world to meet, exchange ideas and learn more about rare diseases and children’s rights, health and data protection. Many of the…
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…
In Spring 2021 the Russian camp for OI-families organized by Fragile Children was under the motto “Osteonopolis”. The camp participants landed in ancient Greece. They were divided into groups with different political parties and tried their best in creating social programs. Then political candidates would present their programs in the elections and the winner would…
![[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)
