2015-05-30
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Benjamin Alman, M.D., FRCSC
Head, Division of Orthopaedic Surgery
The Hospital for Sick Children
555 University Avenue
Toronto, Ontario
Canada M5G 1X8
Tel: 416- 813-7980
Fax: 416-813-6414
Email: benjamin.alman@sickkids.ca
Darko Anticevic, M.D.
Professor
Department of Orthopaedics
University of Zagreb School of Medicine
Salata 6
10000 Zagreb
Croatia
Tel: 011-385-1-4819911
Email: darko.anticevic@zg.htnet.hr
John Stephen Bamforth, M.D. Department of Medical Genetics 8-53 Medical Sciences building University of Alberta Hospital Edmonton, Alberta T6G 2H7 Canada
Tel: 1-780-407-7327 Fax: 1-780-407-6845 Email: sbamfort@cha.ab.ca
Jonathan Bernstein, M.D.
Director
Children’s Center for Cancer & Blood Diseases of Las Vegas
1090 E. Desert Inn
Suite 200
Las Vegas, NV 89109
Tel: 702-732-1493
Fax: 702-732-1080
Email: jonbern1@aol.com
Cindy Blifeld, M.D.
Lompoc Valley Pediatric Care Center, Inc.
1111 East Ocean Avenue #6
Lompoc, CA 93436
Tel: (805) 736-4970
Fax: (805) 736-7592
Email: CindyBlifeldMD@lvpcc.com
Tae-Joon Cho, M.D.
Associate Professor
Department of Orthopaedic Surgery
Seoul National University Children’s Hospital
28 Yongon-dong Jongno-gu
Seoul 110-744
Republic of Korea
Tel: 011-82-2-760-3640
Fax: 011-82-2-745-3367
Email: tjcho@snu.ac.kr
In Ho Choi, M.D.
Professor
Department of Orthopaedic Surgery
Room 6314
Seoul National University Children’s Hospital
28 Yongon-dong Jongno-gu
Seoul 110-744
Republic of Korea
Tel: 011-82-2-2072-2878
Fax: 011-82-2-2745-3367
Email: inhoc@snu.ac.kr
J. Michael Connor, M.D.
Professor and Chief
Institute of Medical Genetics
University of Glasgow Medical School
Glasgow G3 8SJ
Scotland
United Kingdom
Tel: 011+44 141 201 0363/2114/0365
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Fax: 011-44-141-357-0364
E-mail: J.M.Connor@clinmed.gla.ac.uk
Carmen L. De Cunto, M.D.
Professor and Chief
ПОФ Clinical Advisor, Argentina
Pediatric Rheumatology Section
Department of Pediatrics
Hospital Italiano de Buenos Aires
Gascón 450, 1181
Ciudad Autónoma de Buenos Aires
Argentina
Tel: 5411-4959-0578
Fax: 5411-4959-0577
Email: carmen.decunto@hospitalitaliano.org.ar
Patricia L. R. Delai, M.D.
Orthopaedic Department of Santa Casa de Misericórdia de
São Paulo School of Medicine
Faculdade de Ciências Médicas da Santa Casa de São Paulo –
Departamento de Ortopedia
Rua Pedro de Toledo 129 cj 121 - Vila Clementino
Cep: 04039-001
São Paulo
Brazil
Tel: 55-11- 5539-5817 (office) or 55-11- 9658-8816 (cell) or
55-11- 3501-1891 (home)
Email: patriciadelai@uol.com.br
Martin Delatycki
Associate Professor
Director, Bruce Lefroy Centre for Genetic Health Research
Clinical Geneticist, Genetic Health Services
Victoria Murdoch Children’s Research Institute
Royal Children's Hospital
Flemington Road
Parkville, 3052
Victoria
Australia
Tel: +61 3 8341 6284
Fax: +61 3 8341 6390
Email: martin.delatycki@ghsv.org.au
Maja DiRocco, M.D.
Unit of Rare Diseases
Department of Pediatrics Gaslini Institute
Largo Gaslini 3
16147 Genoa
Italy
Tel: +39-010-563-6794
Fax: +39-010-563-6211
Email: majadirocco@ospedale-gaslini.ge.it
Gerald Ente, M.D. 344 1st St
Mineola, NY 11501-3733 Tel: 516- 873-3683 Fax: 516-873-3084 Email: entedoc@aol.com
Gabriele Gillessen-Kasebach, M.D.
Professor and Chair of Genetics
Institut für Humangenetik Lübeck
Universitätsklinikum Schleswig-Holstein
Ratzeburgeralle 160
D-23538 Lübeck
Germany
Tel: +494515002620
Fax: +494515004187
Email: g.gillessen@uk-sh.de
David L. Glaser, M.D.
Assistant Professor
Department of Orthopaedic Surgery
University of Pennsylvania Health System
Presbyterian Hospital/1 Cupp
39th and Market Street
Philadelphia, PA 19104
Tel: 215-349-8735 or Cell: 215-510-3261
Fax: 215-349-5928
E-mail: david.glaser@uphs.upenn.edu
Robert Goldsby, M.D.
Associate Professor
Department of Pediatrics, Division of Pediatric Hematology/Oncology
Box 0106
University of California San Francisco
San Francisco, CA 94143-0734
Tel: 415-476-3831
Fax: 415-502-4372
Email: goldsbyr@peds.ucsf.edu
Jay Groppe, Ph.D.
Associate Professor
Department of Biomedical Sciences
Baylor College of Dentistry
Texas A & M University Health Science Center
3302 Gaston Avenue
Dallas, Texas 75246
Tel: 214-370-7203 (office) or 214-370-7212 (laboratory)
Fax: 214-874-4538
Email: jgroppe@bcd.tamhsc.edu
Nobuhiko Haga, M.D.
Professor
Department of Rehabilitation Medicine
Graduate School of Medicine
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The University of Tokyo
7-3-1 Hongo, Bunkyo-ku
Tokyo 113-8655
Japan
Tel: 011+81-3-5800-8795
Fax: 011+81-3-5684-2094
Email: hagan-reh@h.u-tokyo.ac.jp
Charles C. Hong, M.D., Ph.D.
Assistant Professor
Department of Medicine
Vanderbilt University School of Medicine
2220 Pierce Avenue
383 Preston Research Building
Nashville, TN 37232
Cell: 615-332-1402
Phone: 615-936-7032
Email: charles.c.hong@vanderbilt.edu
Julie Hoover-Fong, M.D., Ph.D.
Clinical Director
Greenberg Center for Skeletal Dysplasias
McKusick-Nathans Institute of Genetic Medicine
Johns Hopkins University
600 N. Wolfe Street – Blalock 1008
Baltimore, MD 21287
Tel: 410:955-3071
Fax: 410-502-2375
E-mail: jhoover2@jhmi.edu
Frederick S. Kaplan, M.D.
Isaac and Rose Nassau Professor of Orthopaedic Molecular Medicine
Director, Center for Research in ПОФ & Related Disorders
The University of Pennsylvania School of Medicine
Hospital of The University of Pennsylvania
Department of Orthopaedic Surgery
Silverstein Pavilion - Second Floor
3400 Spruce Street
Philadelphia, PA 19104, USA
Tel: (Office) 215-349-8726/8727 or (Home) 215-545-0758
Fax: 215-349-5928
Email: frederick.kaplan@uphs.upenn.edu
Takenobu Katagiri, Ph.D.
Head and Professor
Division of Pathophysiology
Research Center for Genomic Medicine
Saitama Medical University
1397-1 Yamane, Hidaka-shi
Saitama 350-1241
Japan
Tel: 011-81-42-984-0443
Fax: 011-81-42-984-4651
Email: katagiri@saitama-med.ac.jp
Mary Ann E. Keenan, M.D.
Professor
Department of Orthopaedic Surgery
Director, Neuro-Orthopaedics Program
Department of Orthopaedic Surgery
University of Pennsylvania Medical Center
2 Silverstein
3400 Spruce Street
Philadelphia, PA 19104
Tel: 1-215-349-8691
Fax: 1-215-349-5928
Email: maryann.keenan@uphs.upenn.edu
Joseph A. Kitterman, M.D.
Professor Emeritus
Department of Pediatrics and Cardiovascular Research Institute
U-503, Box 0734
University of California San Francisco
San Francisco, CA 94143-0734
Tel: 415-383-3471
Fax: 415-476-9976
Email: j-k-kitterman@att.net
Uri A. Liberman, M.D., Ph.D.
Professor of Physiology & Medicine
Tel Aviv University
Physiology & Pharmacology
Sackler Faculty of Medicine
25 Tagore Street
Tel Aviv 69203
Israel
Tel: +972-36417827
Fax: +972-36419506
Email: uliberm@post.tau.ac.il
Shio Jean Lin, M.D.
Vice Dean for Medical Education
Professor in Pediatrics
National Cheng Kung University School of Medicine
Deputy Superintendent
National Cheng Kung University Hospital
138 Sheng-Li Road
Tainan 70428
Taiwan
Tel: 1-886-6-2353535 X 2002 or 5286
Fax: 1-886-6-2097950 or 886-6-2380519
Martine Le Merrer, M.D.
Professor
Department of Genetics
INSERM U781
Hopital des Enfants Malades
49 Rue de Sevres
75015 Paris
France
Tel: 011 33-(0)1-44-49-51-51/52
E-mail: lemerrer@necker.fr
Jim McGill, M.D.
Clinical Geneticist
Director, Department of Metabolic Medicine
Royal Children’s Hospital
Ground Floor, Surgical Building
Herston Road
Herston, Queensland 4029
Australia
Tel: 61-7-3636-8176
Fax: 61-7-3636-5505
Email: Jim_McGill@health.qld.gov.au
Fergus E. McKiernan, M.D. Center for Bone Diseases Marshfield Clinic 1000 North Oak Avenue Marshfield, WI 54449-5777 Tel: 715-387-5682 Fax: 715-387-5644 Email: mckiernf@mfldclin.edu
Ralph J. Marino, M.D., M.S., FACRM
Associate Professor
Department of Rehabilitation Medicine
Jefferson Medical College of Thomas Jefferson University
132 South 10th Street
Suite 375 - Main Building
Philadelphia, PA 19107
Tel: 215-955-5756
Fax: 215-955-5152
Email: ralph.marino@jefferson.edu
Deanna Mitchell, M.D.
Attending Pediatric Hematologist-Oncologist
DeVos Children’s Hospital
Pediatric Hematology/Oncology
100 Michigan NE Grand Rapids, MI 49503
Tel: 616-391-2086
Fax: 616-391-8873
E-mail: deanna.mitchell@devoschildrens.org
Rolf Morhart, M.D.
Medical Director
Department of Pediatrics
Klinikum Garmisch-Partenkirchen GmbH
Auenstraße 6
D-82467 Garmisch-Partenkirchen
Germany
Tel. +49-(0)8821 / 77-1350
Fax. +49-(0)8821 / 77-1351
Email: rolf.morhart@KliniKum-gap.de
Geert Mortier, M.D., Ph.D.
Professor of Medical Genetics
Center for Medical Genetics
Ghent University Hospital
De Pintelaan 185
B-9000 Gent
Belgium
Tel: +32-9-3322458 or +32-9-3323603 (office)
Fax: +32-9-3324970
Email: geert.mortier@UGent.be
Stefan Mundlos, M.D.
Professor
Departments of Medicine and Genetics
Institut für Medizinische Genetik
Charité – Universitäts-Medizin Berlin
Campus Virchow-Klinikum
13353 Berlin, Germany
E-mail: stefan.mundlos@charite.de
Coen Netelenbos, M.D., Ph.D.
Professor
Departments of Medicine and Genetics
Division of Endocrinology
University Hospital Vrije Universiteit
De Boelelaan 1117/ P.O. Box 7057
1007 MB Amsterdam
The Netherlands
Tel: 011 31 20 444 0530
E-mail: c.netelen@vumc.nl
Dau-Ming Niu, M.D., Ph.D.
Director, Medical Genetic Center of Taipei
Veterans General Hospital
Associate Professor, Institute of Clinical Medicine
National Yang-Ming University
No. 201, Sec. 2, Shih-Pai Road
Taipei 112
Taiwan
Tel: 1-886-2-66115889
Fax: 1-886-2-28767181
Email: dmniu1111@yahoo.com.tw
Robert J. Pignolo, M.D., Ph.D
Assistant Professor
Director, Ralston-Penn Clinic for Osteoporosis & Related Bone Disorders
Department of Medicine Division of Geriatric Medicine
University of Pennsylvania School of Medicine
751 Biomedical Research Building II/III (BRB II/III)
421 Curie Boulevard
Philadelphia, PA 19104-6061
Telephone: 215-573-4394
Fax: 215-573-7599
Email: pignolo@mail.med.upenn.edu
Roberto Ravazzolo, M.D.
Professor
Laboratory of Molecular Genetics
G. Gaslini Institute
Department of Pediatrics and CEBR
University of Genova
Largo G. Gaslini 5
16148 Genova
Italy
Tel: 011-39-010-5636370; 011-39-010-563-6400
Fax: 011-39-010-377-9797
Email: rravazzo@unige.it
David M. Rocke, Ph.D. Distinguished Professor Division of Biostatistics School of Medicine University of California-Davis One Shields Avenue Davis, California 95616 Tel: 530-752-6999 E-mail: dmrocke@ucdavis.edu
John G. Rogers, M.D.
Senior Medical Geneticist, Emeritus
10 Albany Road
Toorak 3142
Victoria, Australia
Tel: +613 9822 2943 or +61 412 777 123 (cell)
Email: rogfam@bigpond.net.au
Eric Ronge, M.D.
Consultant Pediatrician
Pediatric Department
Central Hospital
SE-54185
Skönde, Sweden
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Tel: +46-500-431-000 or +46-500-432-295
Fax: +46-500-432-029
Email: eric.ronge@vgregion.se
Astrid Schulze, M.D.
Consultant Pediatrician/Pediatric Neurologist
Child Neuro/Disability Service Sofievägen 2
University Hospital
SE-222-41
Lund, Sweden
Tel: +46-46-770-761 or +46-46-770-709
Fax: +46-46-770-710
Email: Astrid.Schulze@skane.se
Petra Seemann, Ph.D.
Senior Investigator
Max Planck Institute for Molecular Genetics
Development and Disease
Ihnestr. 73
14195 Berlin
Germany
Tel: 011-49 30 8413 1449
Fax: 011-49 30 8413 1385
Email: seemann@molgen.mpg.de
Eileen M. Shore, Ph.D.
Associate Professor
Departments of Orthopaedic Surgery and Genetics
Co-Director, Center for Research in ПОФ & Related Disorders
Director, ПОФ Laboratory
The University of Pennsylvania School of Medicine
424 Stemmler Hall
36th & Hamilton Walk
Philadelphia, PA 19104
Tel: 215-898-2330/2331
Fax: 215-573-2133
E-mail: shore@mail.med.upenn.edu
Steve Shuss, M.D. 197 Cedar Lane Teaneck, NJ 07666 Tel: 201-836-7171 Fax: 201-928-4227
David Sillence, M.D. FRACP FAFRM (Hon)
Professor of Medical Genetics
Head of Connective Tissue Dysplasia Clinic
The Children's Hospital at Westmead
Locked Bag 4001
Westmead NSW 2145
Sydney, Australia
And
Department of Genetic Medicine Westmead Hospital (adults)
Westmead NSW 2145
Sydney, Australia
Tel: 61-2-9845-0000
Fax: 61-2-9845-3489
Email: davids@chw.edu.au
Roger Smith, M.D.
Honorary Consultant Physician
Nuffield Orthopaedic Centre
Windmill Road
Headington
Oxford OX3 7LD
England
United Kingdom
Tel: 011-44-186-579-0800
Email: Ann.Burrows@ndos.ox.ac.uk
Jeffrey Tabas, M.D.
Director Performance Improvement
San Francisco General Hospital Emergency Services
Associate Professor
UCSF School of Medicine
505 Parnassus Avenue, L138, Box 0208
San Francisco, CA 94143
Tel: 415-206-5759
Fax: 415-206-5818
Email: jeff.tabas@emergency.ucsf.edu
James T. Triffitt, Ph.D.
Professor
Institute of Musculoskeletal Sciences
Botnar Research Centre
Nuffield Department of Orthopaedic Surgery
University of Oxford
Nuffield Orthopaedic Centre
Oxford OX3 7LD, United Kingdom
Tel: 011-44-1865-227660
Fax: 011-44-1865-227673
Email: james.triffitt@ndos.ox.ac.uk
Pernille Tryli, M.D.
Attending Pediatric Physician
Tryli Atna
Hedark N-2476
Norway
Tel: 0047-97188496
E-mail: pernille.tryli@sykehuset-innlandet.no
Heinz Unterbörsch, M.D.
Attending Orthopaedic Surgeon
Orthopädische Praxis
Friedrich-Offermann-Strasse 5
51429 Bergisch Gladbach
Bensberg
Germany
Tel: 011+49 2204-51027
Fax: 011+49 22 04-51028
J. Andoni Urtizberea, M.D.
Assistance Publique - Hôpitaux de Paris (AP-HP)
Attending physician of Physical Medicine and Rehabitation
Hospital Marin
Route de la Corniche
64700 Hendaye
France
Tel: 33 (0)5 59 48 26 86
E-mail: andoni.urtizberea@hnd.aphp.fr
Anders Wallin, M.D. Chief of Pediatrics Mälarsjukhuset Barn-och ungdomskliniken 631 88 Eskilstuna Sweden
Tel: (hospital) +4616103000 Tel: (cell) +46708776640 Email: anders.wallin@dll.se
Guosheng Wang, M.D.
Associate Professor
Department of Rheumatology
Anhui Provincial Hospital
17# Lujiang Road
Hefei, 230001
Anhui Province
P.R. China
Tel: 011-86-551-2283475
Fax: 011-86-551-2283475
Email: gswang@mail.hf.ah.cn
Anders Westermark, M.D.
Professor
Karolinska University Hospital
Department of Maxillofacial Surgery
Stockholm, SE 17176
Sweden
Tel: 00 46 851776172
Email: Anders.Westermark@karolinska.se
Mordechai Weiss, M.D.
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Chief, Endocrine Institute
Assaf Harofeh Medical Center
Zerifin 70300
Israel
Tel: +972-8-977-9270
Email: mweiss@asaf.health.gov.il
Michael Whyte, M.D.
Medical-Scientific Director
Center for Metabolic Bone Disease and Molecular Research
Shriners Hospital for Children
2001 South Lindbergh Blvd.
St. Louis, MO 63131
Tel: 314-872-8305
Fax: 314-872-7844
E-mail: MWhyte@shrinenet.org
Paul Wordsworth, M.D.
Nuffield Department of Orthopaedic Surgery
Nuffield Orthopaedic Centre
Windmill Road
Headington, Oxford OX3 7LD
United Kingdom
Tel: -011-1865 -737545
Fax:-011-1865 -737640
Email: paul.wordsworth@clinical-medicine.oxford.ac.uk
Nicholas D. Yeager, M.D.
Assistant Professor of Pediatrics
Section Hematology-Oncology
Nationwide Children’s Hospital
The Ohio State University
700 Children’s Drive
Columbus, Ohio 43205
Tel: 614-722-3553
Fax: 614-722-3699
Email: Nicholas.Yeager@nationwidechildrens.org
Michael Zasloff, M.D., Ph.D.
Adjunct Professor
Departments of Orthopaedic Surgery and Genetics
The Center for Research in ПОФ & Related Disorders
The University of Pennsylvania School of Medicine
and
Professor, Departments of Surgery and Pediatrics
Director, Surgical Immunology
Georgetown University
Med/Dent NW 210
Washington, DC 20007
Tel: 202-687-5707 (office) or 610-617-3488 (home) or 484-433-7807 (cell)
Fax: 202-687-0992
Email: maz5@georgetown.edu
По вопросам, связанным с стоматологией и уходом за полостью рта больных ПОФ, можно проконсультироваться у следующих членов Консорциума:
Burton Nussbaum, D.D.S.
Adjunct Associate Professor, Pediatric Dentistry
University of Pennsylvania School of Medicine;
Special Needs Dentist:
Thomas Jefferson University Medical School and Hospital
Dentistry for Special People
1910 East State Route 70 - Suite 9
Cherry Hill, NJ 08003
Tel: 856-424-5955
Fax: 856-482-7825
E-mail: bikr2th@aol.com
Allen Wong, D.D.S., DABSCD
Hospital Dentistry Program, Director
University of the Pacific
Arthur A. Dugoni School of Dentistry
2155 Webster Street
San Francisco, CA 94115
Tel: 415-720-4609 (cell) or 888-241-3694 (emergency beeper)
Email: awong@pacific.edu
По вопросам, связанным с проведением общей анестезии у больных ПОФ, вы можете связаться с указанным ниже членом консорциума:
Zvi Grunwald, M.D.
The James D. Wentzler Professor and Chairman
Department of Anesthesiology
Thomas Jefferson University and Hospitals
111 South 11th Street, Suite G-8490
Philadelphia, PA 19107
Tel: 215-955-6161
Fax: 215-923-5507
Email: zvi.grunwald@jefferson.edu
For questions on rehabilitation for ПОФ patients, please contact the following consortium members:
Charles E. Levy, M.D.
Chief, Physical Medicine and Rehabilitation Service
North Florida/South Georgia Veterans Health Service
Associate Adjunct Professor, Department of Occupational Therapy
University of Florida
1601 SW Archer Road
Gainesville, Florida 32608
Tel: 352- 374-6065
Fax: 352-374-6116
Email: charles.levy@va.gov
Theresa F. Berner, MOT, OTR/L, ATP
Rehabilitation Team Leader
The Ohio State University Medical Center
Tel: 614 293-3847
Fax: 614 293-6400
E-mail: Theresa.Berner@osumc.edu
