OI Research Fund

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The Osteogenesis Imperfecta Foundation is launching a focused effort to raise new funds to ensure the continued support of our essential research priorities.

Founded in 1970, the Osteogenesis Imperfecta Foundation is the only voluntary national health organization dedicated to supporting people with osteogenesis imperfecta and their families. The Foundation’s mission is to improve the quality of life for people affected by OI through research, education, awareness, and mutual support. Programming makes up 80% of our total spending at the OIF. To continue the current aggressive pace of research that is helping to find new treatments, the OI Foundation is working to fill funding gaps in OI research.

Current research priorities include:

The Michael Geisman Fellowship Grant program awards funding up to $50,000 per year, for two years, to postdoctoral trainees who are currently working on projects with clear relevance to OI, or who have projects that will enable them to develop expertise in OI research. Early-stage investigators are particularly vulnerable during this challenging time and the OIF has a strong commitment to keep them studying OI and rare bone disease.

Expert Consensus Meetings foster collaborations within the medical and patient communities that help to define and advance treatment options for individuals with OI. These working groups address issues that affect mortality and morbidity in people with OI including cardio-pulmonary issues; gastrointestinal issues; dealing with chronic and acute pain; and addressing women’s health issues including pregnancy, postpartum issues, and issues that arise during aging.

Adult Care Initiative brings together patients, caregivers, clinicians, and health researchers to address the issue of transition of care and access to adult care for individuals with rare bone diseases. This research identifies current gaps, barriers, and challenges individuals face, and the potential causes behind them. It also focuses on guidelines to address the issue of finding knowledgeable primary care and suitable specialty support.

The Annual OIF Scientific Meeting brings together more than 100 clinical and basic scientists each year to share groundbreaking research and develop scientific collaborations to accelerate OI research.

Clinical Research Sites of the Brittle Bone Disorders Consortium have worked together for the past 10 years to develop research studies including a vital 1,000-person natural history study of people with OI now in its 15th year of data collection.

Additional Priority Programs:

OIF Regional Conferences are one-day, in-person events that include sessions and discussions on understanding and living with osteogenesis imperfecta. OIF Regional Conferences are great opportunities for new and long-time OI community members to learn from expert speakers and meet other individuals and families in the area. We strive to host three regional conferences per year.
OI Clinic and Bone Health Town Halls are bi-annual meetings that provide a unique opportunity for medical professionals who treat patients with OI, and those who are interested in bone health, to connect with each other, stay up to date on OI care topics, and learn about OIF resources.
Support Group Program recognizes the value of creating a space for members of the OI community to share their personal experiences and offer each other support. For many years, OIF Support Groups met in person; however, with advancements in technology, many groups have transitioned to meeting virtually. The primary goal of the OIF Support Groups is to facilitate sharing, education, and social interaction among members.

Please consider making a gift to support these efforts. Donors may designate gifts towards a particular research priority or make their gift an unrestricted research donation. The OIF also accepts gifts of stock and is available to work with your financial advisor on making a gift from your donor advised fund.

Thank you for your support!