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 Jenny Wang, Shriners Hospitals for Children (SHC) – Canada and Khadidja Chougui, PhD candidate in clinical child and adolescent psychology at Université de Montréal, Canada Jenny Wang: My name is Yi Wen (Jenny) Wang, and I graduated from McGill University with a Bachelor of Science Nursing degree in 2019 and a Master of…
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…
The research team at Shriners Hospitals for Children Canada just published “Experiences of Children With Osteogenesis Imperfecta in the Co-design of the Interactive Assessment and Communication Tool Sisom OI: Secondary Analysis of Qualitative Design Sessions” in the JMIR Pediatrics and Parenting. The people behind the article were Maia Siedlikowski, Lianna Curiale, Dr. Frank Rauch and…
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…
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…
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…
![[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)
