Final Reminder: Survey Opportunities for the OI Community
The Osteogenesis Imperfecta Foundation would like to bring your attention to survey opportunities for OI community members.
Orthopedic Patient Survey
A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. Please take a moment to complete this survey. Your participation will help these OI experts better understand the needs of people living with osteogenesis imperfecta.
Please take 5-10 minutes to complete the survey by Sunday, October 18, 2020.
Rare Diseases Clinical Research Network COVID-19 Survey
How are you being impacted by the novel coronavirus pandemic?
Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH’s Rare Diseases Clinical Research Network. Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.
Disclaimer: The OI Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting these surveys. 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. We are available to answer questions on this or any other research announcement.
Please contact the OI Foundation at (301) 947-0083 or email@example.com.
*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.
View the recording of this session at https://www.youtube.com/watch?v=5zYAnaOFPUs
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.
Below is the recording of this session:
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.
The OI Foundation has published fact sheets on many topics related to understanding and living with OI. View all OIF Fact sheets at www.oif.org/informationcenter/factsheets/.
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.
To suggest a topic for upcoming COVID-19 Q&A video sessions, please email firstname.lastname@example.org.