Osteogenesis Imperfecta Foundation

Are you attending the 2024 American Society for Bone and Mineral Research (ASBMR) Annual Meeting? Don't miss the Rare Bone Disease Alliance Pre-Meeting on Thursday, September 26! OIF CEO Tracy Hart will present "Advocacy and Patient Representative - Representing the communities of patients and families," and OIF Board of Directors Vice President Michelle Fynan will present "Advocacy and Patient Representative - Living with OI in my family." Learn more at https://lnkd.in/g7gj982Q

PARALYMPICS STARTING NOW! The Paris 2024 Paralympic Games will take place from today to September 8th, featuring as many as 4,400 athletes from around the world. They will compete in 22 sports across various iconic venues in Paris, including at the Eiffel Tower, the Chateau de Versailles and the Grand Palais. Among these 4400 athletes, we have several OI athletes you can cheer for, alongside the athletes from your own country. One of the OI athletes is Alejandra Aybar from the Dominican Republic, who now lives in the German city of Bonn. She is 35 years old, has OI Type III, and will be competing in swimming. We did a short chat with her before she arrived in Paris. In the article you can also find a list of the other competing athletes with OI that we know about: https://lnkd.in/dRaFsZZi #paralympics #athleteswithOI #swimming #parasport

During the Fitness for O.I. session at the OIF National Conference, I talked about how to approach using equipment in the gym if you’re feeling intimidated. #osteogenesisimperfecta #fitness #UNBREAKABLE #FitnessCoach #disableyourdisability #disability Osteogenesis Imperfecta Foundation

SUMMARY FROM TOPICAL MEETING ON PAIN AND OI In June 2023 we organized the topical meeting “Balancing life with OI” in Stockholm on the causes, assessment and management of pain in OI and its impact. It has taken a while, but we are proud of the end result - which is an official summary of the most central talks and take away messages from the conference. The report also include links to all the talks on YouTube and links to more resources: https://lnkd.in/dzN8KFdZ The summary will be used in our work to develop a toolbox about how to manage pain in OI, which we have already started on. Our goal is to finish the toolbox in 2025. #osteogenesisimperfecta #painandOI #painmanagement #painassessment

OI Research Update from the Brittle Bone Disorders Consortium: Exploring Bone Age Maturation During Adolescent Growth in Patients with Osteogenesis Imperfecta In this study, researchers explored bone age maturation during adolescent growth in patients with OI. The team compared radiographs of the hand and wrist in 159 children with OI ages 8 to 17 with healthy controls. Bone ages were repeated around two years later and analyzed by both an endocrinologist and automated program called BoneXpert. https://lnkd.in/gTdBYjF7 Disclaimer: The OI Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting this study. The mission of the OIF is to keep the OI community informed of all relevant studies. This information is made available as a service to the OI community.

Today we celebrate 54 years of the OI Foundation! Founded in 1970, the OI Foundation has provided information and resources to families living with osteogenesis imperfecta for the past 54 years. Generous support from donors like you helps the OIF continue to move forward in our mission to improve the quality of life for those living with OI through research, education, awareness, and mutual support. Members who give $1,000 will become part of the 1970 Society commemorating the OIF's anniversary! Learn more or become a member today at www.oif.org/member.

The August issue of the OIF E-Newsletter is here! Read about OIF National Conference, Updates from the OIF, Back to School Tips, Upcoming Events, and more at https://lnkd.in/eGR6jPmX

Register Today! Please join us for our next OI TeleECHO Clinic Series session on Wednesday, August 14, 2024 at 3:00PM ET. This session will focus on the Transition from Pediatric to Adult Care for Patients with OI and will be led by Dr. Laura Tosi, MD from Children's National Hospital. Register for this session at https://lnkd.in/g8x43Fkr OI ECHO sessions highlight a brief didactic presentation, followed by participant-led case presentation and group discussion of the presented case(s). This ongoing educational program aims to build capacity to safely and effectively diagnose and treat osteogenesis imperfecta (OI). The full schedule with links to register for specific session topics is available at www.oif.org/echo/oi. Recordings of each presentation are posted after each session. Thank you for participating in this exciting educational program, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes).

The next OIF National Conference will be held at the Rosen Centre in Orlando, Florida on July 23-26, 2026! We can't wait to see you there!

Phoenix Children’s was proud to sponsor the 2024 Osteogenesis Imperfecta Foundation National Conference. Dr. Maegen Wallace (left), surgical director of our Metabolic Bone and Osteogenesis Imperfecta (OI) Clinic, and Auburn Gibbons (right), the clinic’s nurse program coordinator, were both on hand to represent our pediatric health system and share their expertise. #ChildrensHospital #Pediatrics #OsteogenesisImperfecta #MedicalConference