What You Need to Know About Clinical Trials

*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

OI Community Call: Mental Health during COVID-19

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 PCOR Project Approved for Supplemental Funding Award

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.

Click here to learn more.

Learn More about COVID-19 from OI Experts

 

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:

 

Pneumonia Vaccine Update

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.

Pneumonia Vaccine Update – Information for Children and Adults who have OI

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/.

 

COVID-19 Q&A: Nutrition

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

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.

Click here to view the full transcription of this recording.

To suggest a topic for upcoming COVID-19 Q&A video sessions, please email bonelink@oif.org.


COVID-19 Q&A: Mental Health and Self-Care

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.

Click here to view the transcription of this recording 

To suggest a topic for upcoming COVID-19 Q&A video sessions, please email bonelink@oif.org.


 

 

Discuss COVID-19 with OI experts

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 bonelink@oif.org and we will respond to you as soon as possible.

To suggest a topic for upcoming COVID-19 Q&A video sessions, please email bonelink@oif.org.