Rare Bone Diseases account for 5% of all birth defects and virtually all rare bone diseases cause significant physical disabilities. Patients and caregivers are frequently isolated and uncertain about best care practices. Using virtual technology allows patients and clinicians to connect and to gain knowledge of their particular rare bone disorder.
The project Leveraging Virtual Communication to Advance PCOR Adoption by the Rare Bone DiseaseCommunity will work to leverage the relationships among members of the Rare Bone Disease Alliance to host virtual meetings with leaders and stakeholders as well as clinician/researchers who often care for a number of rare diseases. The Rare Bone Disease Alliance is a network of patient groups and professionals dedicated to improving the lives of people with various rare bone diseases.
The aim of the project is to share the successful PCOR experience of the Osteogenesis Imperfecta Foundation with the rare bone disease community. The project will pay particular attention to reaching stakeholders from underrepresented communities.
To achieve this goal, the project will convene a series of virtual meetings over one year that enhances collaboration among rare bone disease communities; increases underrepresented community participation in PCORI; engages with stakeholders who may be disadvantaged by the digital divide; initiates an engagement approach that fosters collaboration and partnerships; and develops a road map to implement and sustain robust stakeholder engagement built solely on virtual platforms. The project will convene a series of 3 large group virtual meetings that will introduce PCOR to the rare bone disease communities. In addition, the project will hold several focus group virtual meetings with patients and caregivers to ascertain the barriers to expert care from the patient perspective while identifying potential collaborative clinical research opportunities.
The 13 Rare Bone Disease Alliance patient organizations are invited to make up the project’s Advisory Committee along with other stakeholders, including rare bone expert clinicians.
The Osteogenesis Imperfecta Foundation serves as the lead patient organization supported by OI expert and orthopedic surgeon Dr. Laura Tosi and Duke University’s Dr. Bryce Reeve, from its Populations Sciences Department, as subcontractors.
We are excited to share that the Impact Survey was completed by more than 2,000 OI community members from 66 countries! The results from this survey will be used to enable better healthcare services for both children and adults and to support availability of potential future treatments for OI.
“We are thrilled to have collected the largest global gathering of data about the impact that osteogenesis imperfecta has on people with OI, families, and caregivers. This is a remarkable number of responses, and we eagerly await the first data publications,” added Tracy Hart, CEO of OIF.
The IMPACT Survey was made possible through a close collaboration and partnership between Mereo, Ultragenyx, and the OI community, led by the Osteogenesis Imperfecta Federation Europe (OIFE) and the OI Foundation (OIF). Click here to read the full press release.
Congratulations to OIF T-Shirt Contest finalists: Sue Krug, Darla Vogt, and Dottie Ruhlig!
Thank you to all artists and designers for creating wonderful graphics for the next official OIF t-shirt! While we wish we could use them all, the top 3 designs have been selected and were judged based on their originality, capturing the spirit of the OI community, and adherence to design and submission rules and guidelines.
*VOTE FOR THE WINNER!*
There are two ways to vote for your favorite t-shirt design:
Voting will end on October 31, 2021. The winning design will be featured on the OIF’s online t-shirt store starting on November 1st. The winner will receive acknowledgment in the OIF’s print newsletter, Breakthrough, as well as a FREE t-shirt with their design.
October is National Disability Employment Awareness Month (NDEAM)! The purpose of NDEAM is to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities. Learn more at www.dol.gov/NDEAM.
Last year, Gary Phelan and Michelle Duprey joined the OIF to discuss Employment Accommodations during 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. Watch the recording of this session at https://youtu.be/w-whtdK3NKc
Jo Ann Berkenbush, a long-time volunteer of the OI Foundation is celebrating her 70th birthday with the OI Foundation!
For her birthday, Jo Ann has invited friends and family to make a gift to the OIF’s Kasper Kendall Scholarship program, which was created in memory of Rosemarie Kasper and Jamie Kendall. Rosemarie, a dear friend of Jo Ann and the OI Foundation, attended nearly every OIF National Conference. Today, Kasper Kendall Scholarships provide financial assistance for OI community members to attend the OIF National Conference. To make a gift in honor of Jo Ann’s birthday to the Kasper Kendall Scholarship program, please visit www.oif.org/give/joannsbirthdayfundraiser.
Happy Birthday, Jo Ann, and thank you for your support!
The Current State of OI Research: Dental Health and Orthodontics
Last week, Dr. Jean-Marc Retrouvey (Professor and Chair of the Department of Orthodontics and Dentofacial Orthopedics at the University of Missouri-Kansas City) and Tracy Hart (OIF CEO) joined OI community members to discuss current research in dental health and orthodontics. Watch the recording of this session above, or at https://youtu.be/iRfYoOpJf_k.
This session is the third in a series meant to demystify and contextualize medical research from the Brittle Bone Disorders Consortium (BBDC). The BBDC is a multicenter initiative that focuses on understanding and providing better treatment options for osteogenesis imperfecta. The previous BBDC research updates can be viewed here.
As a partner of the OIF, the BBDC has 3 major goals:
Gain a better understanding of all genetic forms of OI
Expand treatment options for those with OI
Help guide the next generation of physicians and scientists.
The purpose of this study is to determine if it is safe to use Invisalign clear aligners in correcting the misalignment of teeth in people with OI. Clear aligners are transparent plastic trays that are designed to fit over your teeth. With each new tray, teeth are moved a little at a time until they reach the desired position. We plan to have approximately 57 people take part in this study.
For more information, please contact Dianne Nguyen (BBDC Project Manager) at (713)798-6694 or firstname.lastname@example.org.