A message from OIF Health Educator, Jessica Ransome:
Hello Everyone! It was so great seeing so many familiar faces and meeting new community members over the weekend during Virtual OIF Conference! I encourage you to join me for OIF Virtual Office Hours – now TWO DAYS a week!
TUESDAYS (12pm ET and 6pm ET)
THURSDAYS (12pm ET and 6pm ET)
Log on to learn more about OIF programs and resources, ask questions or just drop in to say hello! I hope to see you soon!
Join the OIF for a Research Update on Women’s Health and Pregnancy
OI community members joined the OIF for a conversation with Dr. Deborah Krakow, OIF Medical Advisory Council (MAC) member and Professor and Chair of Obstetrics and Gynecology at UCLA, and Tracy Hart, OIF CEO, to discuss current research in women’s health and pregnancy.
The Brittle Bone Disorders Consortium (BBDC) is a multicenter initiative that focuses on understanding and providing better treatment options for osteogenesis imperfecta. The first BBDC update with Dr. Brendan Lee and Cameron Penn can be viewed here.
As a partner of the OIF, the BBDC has 3 major goals:
Gain a better understanding of all genetic forms of OI
Expand treatment options for those with OI
Help guide the next generation of physicians and scientists.
We’re delighted to announce that The IMPACT Survey is now LIVE and will be open until September 10, 2021!
The IMPACT Survey is an international survey aimed at capturing and quantifying the real impact OI has on people’s lives to enable better diagnosis, treatment and care, and to support availability of potential future treatments for OI. The results from this survey will be used to enable better healthcare services for both children and adults and to support availability of potential future treatments for OI.
If you have OI, or are a parent/caregiver of a child with OI, we want to hear from you! Make an IMPACT on the future of OI research by completing the first-ever GLOBAL OI survey at: www.impactsurveyoi.com
The IMPACT Survey is a joint research project between the Osteogenesis Imperfecta Foundation, Osteogenesis Imperfecta Federation Europe and the pharmaceutical company Mereo BioPharma.