Month: September 2020

Final Reminder: Survey Opportunities

Posted on by Delores Selivon

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

Posted on by Delores Selivon

*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

Thank you, PanAmerican Seed!

Posted on by Delores Selivon

Thank you, PanAmerican Seed! 
Last year, the plant breeders and researchers at PanAmerican Seed launched a selection of impatiens that displayed high resistance to Impatiens downy mildew – Beacon Impatiens. In the spirit of bringing light — and happiness! — to gardens everywhere, they pledged to donate 3% of sales during the 2020 season to the OI Foundation.

Last week, PanAmerican Seed presented a $55,943 donation to past OIF Board Member Tony Benish on behalf of the OI Foundation! Thank you so much for supporting the mission of the OI Foundation! Click here to learn more about PanAmerican Seed’s Beacon Impatiens.

 

Survey Opportunity: Help Orthopedic Surgeons Learn About OI

Posted on by Delores Selivon

The OI Foundation would like to bring your attention to a new survey to help orthopedic surgeons learn more about OI.

A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. 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 at https://www.surveymonkey.com/r/J9653VK.

This survey will be available until Sunday, October 18, 2020.