Helpful Contacts and Addresses
A, B, C, D, G, H, I, K, L, M, N, P, R, S, T, U, W, Y, Z
Medical Specialists | Dental Care Specialists
General Anesthesia Specialists | Rehabilitation Specialists
For questions on medical care for FOP patients, please contact the following:
A
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
E-mail
Darko Anticevic, M.D.
Professor
Department of Orthopaedics
University of Zagreb School of Medicine
Salata 6
10000 Zagreb
Croatia
Tel: 011-385-1-4819911
E-mail
B
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
E-mail
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
E-mail
C
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
E-mail
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
E-mail
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
Fax: 011-44-141-357-0364
E-mail
D
Carmen L. De Cunto, M.D.
Professor and Chief
FOP 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
E-mail
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)
E-mail
Martin Delatycki
Associate Professor
Director, Bruce Lefroy Centre for Genetic Health Research
Clinical Geneticist
Genetic Health Services Victoria
Murdoch Childrens Research Institute
Royal Children's Hospital
Flemington Road Parkville, 3052
Victoria Australia
Tel: +61 3 8341 6284
Fax: +61 3 8341 6390
E-mail
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
E-mail
G
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
E-mail
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
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
E-mail
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: 214-828-8951
E-mail
H
Nobuhiko Haga, M.D.
Professor
Department of Rehabilitation Medicine
Graduate School of Medicine
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
E-mail
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
E-mail
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 or 410-502-4868
Fax: 410-502-2375
E-mail
I
International FOP Association, Inc (IFOPA)
P.O. Box 196217
Winter Springs, FL 32719-6217
Phone (407) 365-4194
Fax (407) 365-3213
E-mail
K
Frederick S. Kaplan, M.D.
Isaac and Rose Nassau Professor of Orthopaedic Molecular Medicine
Director, Center for Research in FOP & 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
E-mail
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
E-mail
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
E-mail
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
E-mail
L
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
E-mail
M
Martine Le Merrer, M.D.
Professor
Department of Genetics
INSERM U781
Hopital des Enfants Malades
49 Rue de Sevres
75015 Paris
France
Tel: 011 33-44 49 51 57
E-mail
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
E-mail
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
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
E-mail
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
N
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
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
E-mail
P
Robert Pignolo, M.D., Ph.D.
Assistant Professor
Department of Orthopaedic Research
University of Pennsylvania School of Medicine
Ian Cali Clinical & Research Scholar
at the Center for FOP and Related Disorders
422 Stemmler Hall
36th & Hamilton Walk
Philadelphia, PA 19104
Tel: 215- 349-8726 (office); 215-573-4394 (lab)
Fax: 215-349-5648
E-mail
R
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
E-mail
David M. Rocke, Ph.D.
Distinguished Professor
Division of Biostatistics
School of Medicine
University of California-Davis
One Shields Ave
Davis, California 95616
Tel: 530-752-6999
E-mail
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)
E-mail
Eric Ronge, M.D.
Consultant Pediatrician
Pediatric Department
Central Hospital
SE-54185
Skönde, Sweden
Tel: +46-500-431-000 or +46-500-432-295
Fax: +46-500-432-029
E-mail
S
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
E-mail
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
E-mail
Eileen M. Shore, Ph.D.
Associate Professor
Departments of Orthopaedic Surgery and Genetics
Co-Director, Center for Research in FOP & Related Disorders
Director, FOP 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
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
Tel: 61-2-9845-0000
Fax: 61-2-9845-3489
E-mail
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
E-mail
T
James T. Triffitt, Ph.D.
Professor
Institute of Musculoskeletal Sciences,
Botnar Research Centre
Nuffield Department of Orthopaedic Surgery
University of Oxford
University of Oxford
Nuffield Orthopaedic Centre
Oxford OX3 7LD,
United Kingdom
Tel: 011-44-1865-227660
Fax: 011-44-1865-227673
E-mail
Pernille Tryli, M.D.
Attending Pediatric Physician
Tryli Atna
Hedark N-2476
Norway
Tel: 0047-97188496
E-mail
U
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
W
Anders Wallin, M.D.
Chief of Pediatrics
Mälarsjukhuset
Barn-och ungdomskliniken
631 88 Eskilstuna
Sweden
Tel: (hospital) +4616103000
Tel: (cell) +46708776640
E-mail
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
E-mail
Anders Westermark, M.D.
Professor
Karolinska University Hospital
Department of Maxillofacial Surgery
Stockholm, SE 17176
Sweden
Tel: 00 46 851776172
E-mail
Mordechai Weiss, M.D.
Chief, Endocrine Institute
Assaf Harofeh Medical Center
Zerifin 70300
Israel
Tel: +972-8-977-9270
E-mail
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
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
E-mail
Y
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
E-mail
Z
Michael Zasloff, M.D., Ph.D.
Adjunct Professor
Departments of Orthopaedic Surgery and Genetics
The Center for Research in FOP & 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
E-mail
For questions on dental care for FOP patients, please contact the following:
Burton L. Nussabum, D.D.S.
Dental Care
Dentistry for Special People, P.A.
1910 Marlton Pike E Ste 9
Cherry Hill, NJ 08003-2123
Office (856) 424-5955
Fax (856) 424-8382
E-mail
Website: www.dentistryforspecialpeople.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)
E-mail
For questions on general anesthesia for FOP patients:
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
E-mail
For questions on rehabilitation for FOP patients (wheelchairs and seating):
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
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
E-mail
