Interview with Agnieszka Czoch-Tokarczyk from the Polish organization. She agreed to share the story of her family with a child with OI for Rare Disease Day Campaign 2026. After getting to know the OI community, what has surprised you the most and what has helped you as a parent? “I first met the OI community…
Interview with Karina Prokopiuk, co-founder of the Ukrainian Association Crystal People. For Rare Disease Day campaign 2026, Karina agreed to share her experience with us, being the mother of a children with OI. Can you share your experience with balancing personal and professional life with a child with OI? Balancing motherhood and professional life with…
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…
LUCIA TRAVEZ, ECUADOR Who are you and what is your connection to OI? I am Lucía Trávez, and I live in Ecuador. My connection to OI is through my daughter, María Paula, who is 28 years old and has a degree in Education. Your daughter Maria Paula was diagnosed with OI. How has this diagnosis…
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…
The charity CURE International has opened their first hospital in Zimbabwe offering free surgery for children with OI and other conditions. CURE International (CURE), a global provider of surgical treatment for children with treatable disabilities, has opened CURE Children’s Hospital of Zimbabwe in Bulawayo, a first-in-the-nation facility providing life-transforming medical care to thousands of vulnerable…
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…
![[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)
