| The International Skeletal Dysplasia Society (ISDS) (www.isds.ch) | The ISDS Society promotes scientific progress in the field of skeletal dysplasias and dysostoses as well as advances in medical, orthopedic, surgical, and psychological care of individuals affected by skeletal dysplasias and dysostoses. Members have access to an email group for diagnostic review and discussion. |
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The European Skeletal Dysplasia Network (ESDN) (www.esdn.org) |
A Europe-wide network of laboratories ( Manchester, Newcastle, Gent, Freiburg, Paris, Lausanne, Oulu) offering diagnostic laboratory confirmation of genetic disorders of the skeleton. Includes a unique clinical and radiologic expert network for on-line clinical-radiographic diagnosis review and help before routing samples to the laboratory. Most ESDN collaborators are ISDS members. |
| The Skeletal Dysplasia Registry at Cedars-Sinai Los Angeles | Large skeletal dysplasia center in the USA (Dr. D.L.Rimoin, Dr. D. Cohn, Dr. W. Wilcox, Dr. D. Krakow, Dr. R. Lachman and coworkers; Los Angeles) with strong research interest (clinical, radiographic and molecular) and tradition. Designed to offer diagnostic help for professionals rather than for medical laymen seeking information. |
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The Freiburg Growth and Skeletal Dysplasia Centre (www.skeldys.org) |
Large clinical and research centre in southern Germany (Freiburg University Children's Hospital) combining previous collaborators of Mainz, Lausanne and Zurich (Drs. A. Superti-Furga, J. Spranger, S. Unger, B. Zabel). Endocrinological expertise present (Dr. K.O.Schwab). Diagnostic laboratory (Dr. Pia Hermanns). |
| Center for the Study of Genetic Bone and Joint Disorders | A consortium of professionals lead by Dr. Matt Warman at Case Western Reserve University, Cleveland, committed to a better understanding of human diseases affecting the skeletal system. As per mid-2006, in the process of moving to Harvard University, Boston. |
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The Greenberg Center for Skeletal Dysplasias at Johns Hopkins University |
Another dedicated skeletal dysplasia center. Contains information on more common types of skeletal dysplasias, links and addresses. The Greenberg Center is lead by Dr. Hoover-Fong. |
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Online Mendelian Inheritance in Man (OMIM, "McKusick catalog") |
Frequently updated and complete reference for genetic and molecular aspects. Less useful for medical laypersons. |
| Help in determining which materials and studies should be obtained after pregnancy interruption or fetal or neonatal death with a diagnostic suspicion of a skeletal dysplasia or malformation syndrome | |
| (Swiss Little People Association) Langackerstrasse 10, CH-6330 Cham, Schweiz, Tel +41-41-780-7810 | |
| (Little Childrens' Parents Group) Sonnmattweg 4, CH-5107 Schinznach Dorf, Schweiz Tel/Fax: +41-56-443-0016 | |
| (Swiss OI Association) Linckweg 2, Postfach CH-3052 Zollikofen, Schweiz Tel +41-41-340-8774 | |
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Contact:
asuperti(at)uniklinik-freiburg.de
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