Clinical Assistant Professor
Pediatric Hematology/Oncology
University of North Carolina at Chapel Hill
Physician Office Building
170 Manning Dr, CB#7236
Chapel Hill, NC 27599-7236
Tel: (919) 966-1178
Email: yabajas@email.unc.edu
Director, Hemostasis and Thrombosis Center, Northwell Health
Program Head Bleeding Disorders and Thrombosis Program
Cohen Children’s Medical Center, Northwell Health
Professor of Pediatrics
Zucker School of Medicine at Hofstra/ Northwell
269-01 76th Ave # 255
New Hyde Park, NY 11040
Tel: (718) 470-3460/7380
Email: Sacharya@northwell.edu
Assistant Professor of Pediatrics
Stanford University
Email: gbatsul@standord.edu
Honorary Senior Lecturer in Haematology,
Department of Cardiovascular Sciences
Faculty of Biology, Medicine and Health
University of Manchester
Oxford Road, Manchester UK
Email: paula.boltonmaggs@gmail.com
Department of Pediatrics
Gulf States Hemophilia & Thrombophilia Center|
6655 Travis, Suite 400 HMC
Houston, Texas 77030
Tel: (713) 500-8345
Email: Deborah.Brown@uth.tmc.edu
Professor of Pediatrics
UMKC School of Medicine
Hematology/Oncology
Director, Anticoagulation Management Program
Children’s Mercy Hospital
2401 Gillham Rd.
Kansas City, MO 64108
Tel: (816) 302-6882
Email: slcarpenter@cmh.edu
Professor of Pediatrics & Molecular Genetics and Genomics
Elizabeth Finney McDonnell Chair in Pediatric Hematology Oncology
Chief, Division of Pediatric Hematology Oncology
Washington University School of Medicine in St. Louis
St. Louis Children’s Hospital
Tel: 314-273-3940
Email: dipaolaj@wustl.edu
Innovative Hematology, Inc.
8326 Naab Road
Indianapolis, IN 46260
Tel: (317) 871-0000
Email: sgupta@ihtc.org
Innovative Hematology, Inc.
8326 Naab Road
Indianapolis, IN 46260
Tel: (317) 871-0000
Email: bhardesty@ihtc.org
Professor of Medicine
Director, UNC HHT Center of Excellence
Division of Hematology,
University of North Carolina at Chapel Hill,
8206B, Mary Ellen Jones Bldg,
116 Manning Drive, CB 7035,
Chapel Hill, NC 27599-7035.
Tel: (919) 966-3311
Email: raj_kasthuri@med.unc.edu
Professor Emerita
Department of Pediatric Hematology
UCSF School of Medicine
San Francisco, CA
Tel: (415) 475-4901
Email: marionkoerper@sbcglobal.net
Attending Staff Hematologist
Mary M. Gooley Hemophilia Center
Rochester Regional Health
Rochester, NY, United States
Tel: (585) 922-4020
Email: peter.kouides@rochesterregional.org
NuVu2, Inc.
San Juan Capistrano, CA, United States
Email: tomk@nuvu2.com
Professor of Pediatrics
University of Colorado
Campus Box F416
13199 E. Montview Blvd, #100
Aurora, CO, 80045
Research Laboratory: AMC Bldg RC-1N, Room 4400C
12800 E. 19th Ave, Aurora, CO 80045
Phone Direct: (303) 724-0365
Email: Marilyn.Manco-Johnson@ucdenver.edu
Department of Biochemistry
University of Ferrara
Province of Ferrara, Italy
Tel: +39 0862 368748
Shannon L. Meeks, MD, MBA
Professor of Pediatrics
John and Elaine Mitchell Chair in Hemostasis
Emory University School of Medicine
Aflac Cancer and Blood Disorders Center
Children’s Healthcare of Atlanta
Tel: 404-785-3523
Email:smeeks@emory.edu
Department of Clinical Medicine
Section of Hematology/Oncology
Indiana University School of Medicine
8326 Naab Road
Indianapolis, IN 46260
Tel: (317) 278-6871
Email: ramehta@iu.edu
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
Angelo Bianchi Bonomi Hemophilia and Thrombosis Center and Fondazione Luigi Villa
Milan, Italy
Tel: +39 02 503 20727
Email: marzia.menegatti@guest.unimi.it
Innovative Hematology, Inc.
8326 Naab Road, Indianapolis, IN 46260
Tel: (317) 871-0000
Email: cnakar@IHTC.org
Associate Professor of Haematology
PROMISE Department
University of Palermo, and Haematoloy and Rare Disease Unit
“Cervello” Hospital
Palermo, Italy
Tel:0926803100
Email: mariasanta.napolitano@unipa.it
Chief and Professor of Hematology
Children’s Hospital of Orange County
UC Irvine Medical Center and Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders
Orange, CA, United States
Tel: (714) 532-8744
Email: dnugent@choc.org
1.Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Angelo Bianchi Bonomi Hemophilia and Thrombosis Center and Fondazione Luigi Villa, Milan, Italy
2.Università degli Studi di Milano, Department of Pathophysiology and Transplantation, Milan, Italy
Tel: +39 02 55 03 5414
Email: flora.peyvandi@unimi.it
Former medical writer at Innovative Hematology
Indianapolis, IN, United States
Medical Director
Innovative Hematology
8326 Naab Road
Indianapolis, IN 46260
Tel: (317) 871-0000
Email: ashapiro@ihtc.org
Department of Pediatrics
UCSF Benioff Children’s Hospital
University of California San Francisco, School of Medicine
San Francisco, CA
Tel: (415) 476-3831
Email: Kristin.Shimano@peds.ucsf.edu
Rare Coagulation Disorders Resource Room, an extension of the RBDD Registry (eu.rbdd.org), was developed in collaboration with the Indiana Hemophilia & Thrombosis Center (www.innovativehematology.org).
The Resource Room serves as a platform to promote international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals. The international RBDD mission, under the leadership of Dr. Peyvandi, will continue to be expanded over time.
The Resource Room thanks all contributing authors of the website articles that have made this valuable information available to the global community of both individuals affected with rare coagulation disorders and their healthcare providers.