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On Thursday, July 8, 2010 before the National Conference officially opens, a limited number of individual appointments for a conversation with an OI specialist will be available. This special feature offers people attending the National Conference the opportunity to have a specific OI related question answered by a medical expert. This program is especially geared for those who do not have access to OI specialists at home. The consultations will be free of charge. Appointments are limited so each person will be able to reserve time with only one or two of the specialists depending on the number of people who request an appointment.
What is a Medical Consultation?
This kind of appointment is very different from visiting an OI Clinic. No examinations will be performed. This is only a conversation. Your appointment is an opportunity to get a second opinion or get an answer for a particular question. Each appointment is 30 minutes long. All appointments are held at the conference hotel.
How to Request an Appointment
Appointments will be scheduled on a first come basis beginning at 10 a.m. EST on Monday, March 1, 2010. There are three ways to request an appointment:
- Call the OI Foundation office at 301-947-0083 or 800-981-2663. Be prepared to answer the questions on the Appointment Request form posted on the foundation web site.
- Print the Appointment Request Form and fax or e-mail the completed document to 301-947-0456 or mhuber@oif.org.
After your request has been received, a “Patient Information Form” will be sent to you by e-mail. This form must be returned to the OIF before your appointment can be confirmed. All appointments will be confirmed by April 6. Depending on which specialist you wish to see you will be asked to bring along test results, or digital x-rays. Every effort is made to fill as many requests as possible. If you have questions about this special program contact Mary Beth Huber at the OI Foundation office at telephone 800-981-2663 or by e-mail at mhuber@oif.org.
Who are the Doctors?
Each doctor is an expert in his or her area, and has extensive OI experience. Many are members of the OI Foundation’s Medical Advisory Council (MAC). All of the specialists who participate in this pre-conference special program will be speaking during the conference. More information about each physician is listed below.
Other Important Information
Please note that we continue taking appointments up until the week before the conference.
A waiting list is maintained in case people have to cancel. Additional doctors are added when possible in areas where there is high demand.
Medical Expert Profiles
Adult Health
Dr. Jay Shapiro
Member of the OIF Medical Advisory Council; Director of the OI Program at the Kennedy Krieger Institute, Baltimore, MD. Dr. Shapiro is an endocrinologist and will discuss managing OI during the adult years
Dr. Emily Germain-Lee
Associate Director of the Bone Center and OI Program at the Kennedy Krieger Institute, Baltimore, MD
Dental
Dr. James Hartsfield, Jr.
Member of the OIF Medical Advisory Council; Professor of Oral Health Research at the University of KY College of Dentistry. Dr. Hartsfield will answer questions related to general dental care, orthodontia, and Dentinogenesis Imperfecta (DI)
Foot & Ankle
Dr. Lynn Gerber
Member of the OIF Medical Advisory Council; Director of the Center for Chronic Illness and Disability and Professor of Rehabilitation Science at George Mason University, Fairfax, VA. Dr. Gerber will answer questions related to standing, and walking.
Genetics
Dr. Peter Byers
Member of the OIF Medical Advisory Council; University of Washington in Seattle Department of Medical Genetics; Dr. Byers’ Collagen Diagnostic Laboratory is a center for the analyses of genetic and collagen tests for OI. Dr. Byers will answer questions about diagnosis, testing, and family history.
Hearing
Dr. David Vernick
Member of the OIF Medical Advisory Council; has a private practice in Chestnut Hill, MA and teaches at Harvard University’s Medical School. Dr. Vernick will answer questions about options for managing hearing loss and explain your audiogram.
Orthopedics
Dr. Peter Smith
Member of the OIF Medical Advisory Council; Orthopedic Surgeon Director of OI Clinic and Co-Director of Gait Analysis Laboratory. Dr. Smith will answer questions about rods and rodding surgery, non-union fractures, and spine problems in children and adults with OI.
Physical Therapy
Holly Cintas, PT, PhD
Member of the OIF Medical Advisory Council; Physical Therapy Research Coordinator at National Institutes of Health Clinical Center in Bethesda, MD. Dr. Cintas will discuss ideas for improving physical fitness in children.
Respiratory
Hollis Chaney, MD
Member of the OIF Medical Advisory Council; Children’s National Medical Center, Washington DC. Dr. Chaney will discuss you questions about improving breathing; managing asthma; and respiratory rehabilitation for children and adults.
Women’s Health
Dr. Deborah Krakow
Member of the OIF Medical Advisory Council; University of California Los Angeles; Dr. Krakow has training in genetics and gynecology and is available to answer a wide range of questions.
Neurology
TBA
Questions about Basilar Impression
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