NEW OIF Resources!

**NEW OIF RESOURCES**

The OI Foundation is excited to present two new resources for OI community members:

Navigating a New Diagnosis: A Tool Kit for Parents and Medical Professionals
This tool kit, sponsored in part by a memorial donation from Minnesota Neonatal Physicians in memory of Michael Johnston, covers topics including diagnosis of OI, types of OI, caring for a newborn with OI, and information to share with your doctor.

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.

Employment Accommodations and COVID-19

Employment Accommodations and COVID-19: Understanding your Legal Rights During the Pandemic

THURSDAY, OCTOBER 15, 2020 // 2:00 – 3:00pm EST

 
On Thursday, October 15, Gary Phelan and Michelle Duprey joined the OIF to discuss Employment Accommodations and COVID-19. Both of the speakers have extensive experience practicing law focusing on employment and disability discrimination. In this session, they discussed the ADA and shared best practices for getting accommodations at work related to COVID-19.

Final Reminder: Survey Opportunities

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.

Complete the Survey


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.

Complete the Survey


 

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 bonelink@oif.org.

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/.