People of all ages living with a rare genetic disease called osteogenesis imperfecta (OI) are meeting this week to share their experience and hope, and to learn about the latest clinical innovations and research breakthroughs into the cause and cure for this devastating disease.
The Osteogenesis Imperfecta Foundation annual conference will take place at the Hilton Portland & Executive Tower, 921 S.W. Sixth Ave, Thursday, July 7, through Saturday, July 10.
Some 43 sessions covering a wide range of topics and featuring the nation’s top OI experts have been planned to help attendees understand, manage and live successfully with the disease. Nearly 500 people from around the nation are expected to attend.
Osteogenesis imperfecta, commonly referred to as “brittle bone disease,” is a genetic disorder characterized by fragile bones that break easily. Patients with this disorder are affected throughout their lifetime; today there is no cure. Because mild osteogenesis imperfecta often goes undiagnosed, it is difficult to know exactly how many Americans are affected, but the range is thought to be between 25,000 and 50,000 people.
Physicians and nurses from Oregon Health & Science University Doernbecher Children’s Hospital, one of six OI Foundation Linked Clinical Research Centers across the country, will play a significant role in supporting the annual conference, giving talks, staffing first aid stations and being available to treat fractures, which occur easily and frequently with little or no cause.
OHSU Doernbecher’s Robert Steiner, M.D., F.A.A.P., a nationally recognized expert on osteogenesis imperfecta and member of the OI Foundation Medical Advisory Council, will discuss his research into the effectiveness of various treatments aimed at minimizing fractures, maximizing mobility and quality of life, and improving the bone density of newborns, children and adults with this devastating disease.
“We are delighted the OI Foundation chose to hold their annual meeting in Portland. Many of us at OHSU Doernbecher Children’s Hospital and Shriners Hospitals for Children — Portland have been treating patients with OI for years and carrying out research in an effort to improve the lives of these patients — it requires a real group effort. We are looking forward to helping out at the meeting, and being able to meet many new people with this condition. The way these families cope with this often devastating disease is truly inspirational and it is my great fortune to get to know them,” said Steiner, vice chairman of pediatric research at OHSU Doernbecher and Credit Unions for Kids Professor of pediatric research in the OHSU School of Medicine.
Steiner has received research funding from the OI Foundation for three consecutive years, and has carried out funded research on OI continuously for the last eight years, beginning his involvement with OI patients and research 20 years ago this week.
For more information about osteogenesis imperfect, visit the OI Foundation Web site: www.oif.org
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OHSU Doernbecher Children’s Hospital (www.ohsudoernbecher.com)
OHSU Doernbecher Children's Hospital is a world-class facility that each year cares for tens of thousands of children from Oregon, southwest Washington and around the nation, including national and international referrals for specialty care. Children have access to a full range of pediatric care, not just treatments for serious illness or injury, resulting in more than 145,000 outpatient visits, discharges, surgeries and pediatric transports annually. In addition, nationally recognized physicians ensure that children receive exceptional care at OHSU Doernbecher, including outstanding cancer treatment, specialized neurology care and highly sophisticated heart surgery in the most patient- and family-centered environment. Pediatric experts from OHSU Doernbecher travel throughout Oregon and southwest Washington to provide specialty care to some 3,000 children at more than 154 outreach clinics in 13 locations.