*NEW OIF RESOURCE* What You Need to Know About Clinical Trials
While the OI community and the entire world eagerly await a coronavirus vaccine, we want to briefly explain the importance of clinical trials and how people with OI can get involved in helping expand medical knowledge.
CLICK HERE to view the OI Foundation’s What you Need to Know About Clinical Trials fact sheet
On Thursday, September 3, 2020, Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities) and Dr. Michelle Fynan (Online Instructor at LA Film School, Online Coach and Therapist) joined fellow OI community members on a video call to discuss mental health considerations during the COVID-19 pandemic.
OI Foundation Project, Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community, Approved for Supplemental Funding Award
The Osteogenesis Imperfecta Foundation is excited to announce that supplemental funding has been approved for the Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community project to include investigating the impact of the COVID-19 pandemic on the osteogenesis imperfecta community. This important project advances the collaboration of the OI Foundation (Tracy Hart, CEO, Lead) and Co-Leads Dr. Laura Tosi, Director, Bone Health Program, Children’s National Hospital and Dr. Bryce Reeve, Director, Center for Health Measurement, Duke University. The goals of the supplemental funding award are to assist the rare bone disease community in developing COVID-19 content and outreach, expand the OI PCOR toolkit to include COVID-19-specific resources, expand OI clinic outreach to disseminate content on COVID-19, and create and disseminate OI-relevant COVID-19 content.
On June 25th, Dr. Laura Tosi and Dr. Reid Sutton discussed how to prepare and what to expect during a Telehealth Visit. After brief presentations, both doctors participated in a Q&A with the OIF and the audience.
OI community members were invited to join OI experts, Dr. Robert Sandhaus (pulmonologist at National Jewish Health in Denver, CO) and Dr. Sandesh Nagamani (clinical geneticist at Baylor College of Medicine in Houston, TX), to discuss how COVID-19 is affecting the OI community. During this session, the speakers provided updates on how COVID-19 may impact those with OI, and provided best practices in approaching the changing landscape of social distancing policies across the United States.
The Foundation is continually developing new information resources in response to the needs of families, individuals, and professionals working with those affected by OI. Thank you to Dr. Robert Sandhaus (University of Colorado School of Medicine, Denver, CO) for helping us update the fact sheet listed below.
Eating Healthy during the COVID-19 Pandemic
Thursday, April 9, 2020 – 1:00pm EST
Ashley Reese, MMN, RDN, LMNT (Clinical Pediatric Dietitian) and Stefanie Sacks, MS, CNS, CDN (Culinary Nutritionist and Author of What the Fork Are You Eating?) joined OI community members to discuss Nutrition and Eating Healthy during the COVID-19 pandemic. Continue reading “COVID-19 Q&A: Nutrition”
COVID-19 Q&A: Orthopedic Perspectives on OI during the COVID-19 Pandemic with OI experts Thursday, March 26, 2020
On Thursday, March 26, 2020 at 5:30 p.m. ET, Jill Flanagan, MD (Children’s Healthcare of Atlanta), Jeanne Franzone, MD (Nemours/Alfred I. duPont Hospital for Children), and Maegen Wallace, MD (Children’s Hospital & Medical Center, Omaha) joined OI community members on a video meeting to discuss orthopedic perspectives on OI during the COVID-19 Pandemic.
COVID Q&A; Mental Health and Self-Care during the COVID-19 Pandemic Thursday, March 26, 2020
On Thursday, March 26, 2020 at 1:00 p.m. ET, the OI Foundation hosted a video meeting to connect OI community members with Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities) and Dr. Michelle Fynan (Online Instructor at LA Film School, Online Coach and Therapist) to discuss mental health and self-care considerations during the COVID-19 pandemic.
During this challenging time, we at the OI Foundation will make every effort to provide you with the most up to date information on how the COVID-19 pandemic is affecting you and the entire OI community.
On Thursday, March 19, 2020 Dr. Robert Sandhaus (pulmonologist at National Jewish Health in Denver, CO) and Dr. Francis Glorieux (Chair of the OIF’s Medical Advisory Council) hosted a video call to provide information about COVID-19 and how we, as an OI community, can keep safe and well during this time. If you were unable to attend, please watch the video below.
To view the full transcription of this recording, click here.
If you have any questions please email email@example.com and we will respond to you as soon as possible.
To suggest a topic for upcoming COVID-19 Q&A video sessions, please email firstname.lastname@example.org.