Clinics, Registries, Professional Networks

Description: Medical clinics and professional organizations specializing in the skeletal dysplasias

Alfred DuPont.Nemours Children's Hospital
Location: Wilmington, Delaware 
Skeletal dysplasia services provided in Genetics and Orthopedics by members of the LPA Medical Advisory Board. 

Bone Dysplasia Clinic, Riley Children's Hospital
Location: Indianapolis, Indiana 
Genetic Consultation and Counseling for Conditions Affecting Bone Growth (Achondroplasia, Osteogenesis Imperfecta and more). 

Connective Tissue / Skeletal Dysplasias Clinic at Cincinnati Children's Hospital
Location: Cincinnati, Ohio 
The Connective Tissue / Skeletal Dysplasia Clinic at Cincinnati Children's Hospital Medical Center provides care and therapy for children and adults. Who do we see? Children and adults with osteogenesis imperfecta (a genetic brittle bone condition), hypophosphatasia, juvenile osteoporosis or excessive fractures for unknown reasons Children and adults with short stature who may have a skeletal dysplasia, growth disorder or form of dwarfism. 

European Skeletal Dysplasia Network
Location: Europe 
ESDN comprises 8 partners in 6 European countries and provides an integrated research and diagnostic network for skeletal dysplasias. The objectives of ESDN are two fold: To understand what cellular, molecular and genetic factors cause bone dysplasias and to develop effective approaches for the diagnosis of bone dysplasias. Ultimately this integrated and multidisciplinary approach will promote the correct diagnosis of many skeletal dysplasias. 
Contact information: Dr. Jacky Taylor, ESDN Project Administrator, c/o National Genetics Reference Laboratory (Manchester), Regional Genetics Services, St. Mary's Hospital, Hathersage Road, Manchester, M13 0JH, UK +44 (0) 161 276 3202 (Tel) +44 (0) 161 276 4058 (Fax) [email protected]

International Skeletal Dysplasia Registry
Location: Los Angeles, California 
The International Skeletal Dysplasia Registry at Cedars-Sinai Medical Center is a referral center for research into the diagnosis, management and etiology of the skeletal dysplasias. For more than three decades, the International Skeletal Dysplasia Registry at Cedars-Sinai Medical Center has been working with physicians, patients and families to precisely diagnose these conditions, many of them rare. 
Contact information: MaryAnn Priore Coordinator, International Skeletal Dysplasia Registry, 8635 West Third St., Suite. 665, Los Angeles, CA 90048. Phone: (310) 423-9915

International Skeletal Dysplasia Society
The principal aim of the Society shall be to promote scientific progress in the field of skeletal dysplasias and dysostoses.

Kathryn and Alan C. Greenberg Center for Skeletal Dysplasias
Location: Baltimore, Maryland 
The Kathryn and Alan C. Greenberg Center for Skeletal Dysplasias is dedicated to the medical care and education of persons with skeletal dysplasias, and to the clinical and laboratory investigation into these conditions. Toward this end, the Center brings together a multidisciplinary team of doctors and investigators dedicated to improving the quality of life for persons of short stature, and furthering basic scientific knowledge about the many causes of dwarfism. 
Contact information: Colleen Gioffreda, clinic coordinator, at (410) 614-0977

Midwest Regional Bone Dysplasia Clinic
Location: Madison, Wisconsin; satellite clinic in Michigan 
Genetics clinic for skeletal dysplasias headed by Dr. Richard Pauli, chair of the LPA Medical Advisory Board 
Contact Information: Midwest Regional Bone Dysplasia Clinic, Clinical Genetics Center, University of Wisconsin-Madison, 1500 Highland Ave., Madison, WI 53705. Phone: 608-262-6228. E-mail: [email protected] 

Northern California Skeletal Dysplasia Clinic
Location: Oakland, California 
The Northern California Skeletal Dysplasia Clinic provides a forum for diagnosis, prevention, and the treatment of skeletal dysplasias throughout the lifespan. The Skeletal Dysplasia Clinic (SDC) offers patients a unique opportunity to have all their medical needs assessed together, as a whole, by a wide variety of specialists. The clinic is a collaboration between the two hospitals/health systems -- Kaiser Permanente Northern California and Children's Hospital and Research Center at Oakland. The only clinic in Northern California, to offer comprehensive, coordinated medical care for people with skeletal dysplasias. 
Contact information: 
Kaiser Permanente: Ericka Okenfuss, MS; Skeletal Dysplasia Clinic; Kaiser Permanente Genetics; 280 W. MacArthur Blvd.; Oakland, CA 94611; Phone: 510-752-6839. 
Children's Hospital Oakland: Emily Rettner, MS Genetics Dept., Children's Hospital and Research Center at Oakland; 747 52nd St., Oakland, CA 94609; Phone: 510-428-3550 x2351

Regional Skeletal Dysplasia Center at Akron Children
Location: Akron, Ohio 
One of only a few skeletal dysplasia clinics that treats both children and adults. The team of physicians and specialists at the center comes from a variety of health care areas and provides diagnostic and therapeutic services that include: Genetic counseling, Pediatric anesthesia, Pediatric and adult spine surgery, Ear, nose and throat medical & surgical care, Pediatric and adult neurology/neurosurgery, Medical and surgical care of the eyes, Urology, Cardiology, Endocrinology, Hand surgery, Nephrology, Joint surgery, Pulmonary care, Gastroenterology, Physical Therapy, Occupational Therapy, Speech and Hearing, Social Services, Dietary Services, Orthotics (bracing). 
Contact information: (330) 543-6633

Skeletal Dysplasia Clinic at Hospital for Sick Kids
Source/Author: Location: Toronto, CANADA 
Skeletal dysplasias is one of the subspecialty clinics run by the Clinical Genetics Program.

Skeletal Dysplasia Clinic, Seattle Children's
Location: Seattle, Washington 
Multidisciplinary skeletal dypslasia clinic coordinated by the Genetics department. 
Contact information4800 Sand Point Way NE, PO Box 5371/7I-2, Seattle, WA 98105. Phone: 206-987-2109. Fax: 206-987-2694.

Skeletal Dysplasia Clinic, Children
Location: Washington, DC 
Skeletal dysplasia clinic is a multi-specialty clinic providing the combined expertise of the Divisions of Genetics & Metabolism, Orthopedics and Physical Medicine and Rehabilitation with consultations from the Division of Dentistry if clinically indicated. 
Contact information: Children's National Medical Center 111 Michigan Avenue, NW, Washington, DC 20010. Deborah Copenheaver, Administrative Office: 202-884-2187.

Skeletal Dysplasia Clinic, Medical Genetics Institute at Cedars-Sinai
Location: Los Angeles, California 
We offer a skeletal dysplasia clinic through the Medical Genetics Institute. The skeletal dysplasia clinic is a unique resource in the medical community. The clinic is designed specifically to serve individuals and families with all types of bone and connective tissue disorders - providing expert knowledge and care for patients with these conditions. A typical clinic visit involves a thorough evaluation by Dr. David Rimoin, medical geneticist and expert in the field of skeletal dysplasias. Patients are also offered the opportunity to meet with a genetic counselor and/or social worker for further resources or assistance. 
Contact information: Medical Genetics Institute, Cedars-Sinai Medical Center, 8700 Beverly Blvd., North Tower, Fourth Floor, Los Angeles, CA 90048. Phone: 1-800-CEDARS-1 (233-2771). Fax: (310) 423-1402

Texas Children's Hospital/Baylor University Skeletal Dysplasia Center
Location: Houston, Texas 
This genetics clinic provides diagnosis, treatment and follow-up care for patients from birth to adulthood with abnormalities of skeletal growth and strength. A staff of geneticists with consulting orthopedists, endocrinologists, neurologists and ophthalmologists evaluate patients during their visits for routine, chronic or acute care. Patients are seen by either self-referral or physician referral. 
Contact information: Phone: 832-822-4298; E-mail: [email protected] 
Additional web site:

The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias - Hospital for Special Surgery - New York
Location: New York City, New York 
The only one of its kind in the Northeast, HSS's Center for Skeletal Dysplasias is dedicated to the comprehensive medical care of individuals with skeletal dysplasia, an umbrella term for a group of more than 100 genetic conditions marked by abnormal bone growth. Multispecialty team offers Genetic Evaluation, Diagnosis and Counseling; Orthopedic Screening and Treatment; Psychosocial Assessment 
Contact Information: Mailing address: Center for Skeletal Dysplasias, Hospital for Special Surgery, 535 East 70th Street, New York, NY 10021 Phone: 212.774.7332

The Osteogenesis Imperfecta Clinic at Kennedy Krieger Institute
Location: Baltimore, Maryland 
Brief Overview: Osteogenesis Imperfecta What causes OI? How severe is OI? What is life like for individuals with OI?