International ECD Care Centers

A network of ECD Care Centers is available to help ECD patients find knowledgeable doctors to confirm a diagnosis and to provide treatments and ongoing care.  Many patients often experience a long delay from symptom onset to diagnosis.  We understand the wait is extremely difficult for patients and their families.  The difficulties many times can continue after diagnosis if the patient is told by their medical team that they have no experience in treating ECD.  We at the ECDGA believe that the identification of Care Centers will help patients as they search to find a medical team in their region with interest and knowledge in treating ECD patients.

Caring for an ECD patient is complicated and takes a team of specialists working together. There are a number of institutions committed to having a team of specialists available to provide the best care to ECD patients. This network of ECD Care Referral Centers are available to help ECD patients and will work with a patient’s local medical team.  Patients and local doctors are urged to reach out to the contacts at these centers for help in diagnosing, treating and monitoring ECD patients.

There are two types of ECD Care Centers:  a Referral Center and an Emerging Center.  An ECD Referral Care Center is one where the institution or a physician at the institution has treated 5 or more ECD patients. These centers are willing and able to prescribe ECD treatments. The lead physician at each center is willing to provide formal or informal consultation on ECD cases at other centers, subject to local policies and procedures related to performing these consultations. These centers also have a pathologist familiar with heterogeneous histopathological manifestations of ECD who is willing to collaborate on ECD cases.

An ECD Emerging Care Center is an institution that is interested in caring for ECD patients, but has not yet treated 5 or more ECD patients. Any medical professional interested in identifying his/her institution as a Referral or Emerging Care Center is encouraged to contact the organization.

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Non-US Referral Care Centers
  1. Australia
    Institutions: Peter MacCallum Cancer Centre and Royal Melbourne Hospital
    Location: 305 Grattan St.
    Melbourne, Victoria
    Australia, 3000
    Contact: Michael Dickinson, MD
    Telephone: +61385599500
  2. Austria
    Institution: Elisabethinen Hospital Linz
    Location: Internal Medicine I (Hemostasis, Hematology and Stem Cell Transplantation and Medical Oncology)
    Fadingerstr. 1, 4020
    Linz, Austria
    Contact: Michael Girschikofsky, MD
    Telephone: +004373276764400
  3. Belgium - Emerging Care Center
    Institution: Université Libre de Bruxelles, Hopital Erasme
    Location: 808, route de Lennik
    1070 Anderlecht
    Contact: Pr. Benoit Vokaer
  4. Brasil
    Institution: Hospital das Clinicas – Instituto do Cancer do Estado de Sao Paulo – Universidade de São Paulo
    Location: Av. Dr. Enéas de Carvalho Aguiar, 255
    São Paulo – SP, Brasil 05403-000
    Contact: Vanderson Rocha, MD, PhD, Juliana Pereira, MD, PhD, André Neder Ramires Abdo, MD
    Telephone: + 00 55 11 4573 7631
  5. Canada - Emerging Care Center
    Institution: University of Alberta, Edmonton
    Location: 4-112h Clinical Sciences Building, 11350, 83rd Avenue
    Edmonton, Alberta,Canada T6G2P4
    Contact: Minakshi Taparia, MD
    Telephone: 780-407-1584 x9
    Fax: 1-7804072680
  6. Canada - Emerging Care Center
    Institution: Mount Sinai Hospital - UHN Toronto
    Location: 60 Murray Street, R 2-220
    Toronto, ON M5T3L9, Canada
    Contact: Christian Pagnoux, MD
    Telephone: + 416 586 4800 x8549, x5519
  7. China
    Institution: Peking Union Medical College Hospital
    Location: Shuaifuyuan 1#
    Beijing, China
    Contact: Xin-xin Cao, MD
    Telephone: Not Available.
  8. France
    Institution: Hôpital Pitié-Salpêtrière
    Location: Institut E3 M
    Service de Mèdecine Interne 2
    47-83 Bd de l'Hopital
    Paris, France 75013
    Contact: Julien Haroche, MD, PhD
    Telephone: + 33 1 42 17 80 37
  9. France
    Institution: Chu Caen – Universite Basse-Normandie
    Location: Avenue de la Côte de Nacre
    14 000 CAEN, FRANCE
    Contact: Achille Aouba, MD
    Telephone: +00 33 2 31 06 52 08 / 31 27
  10. Israel
    Institution: Assuta Medical Center
    Location: HaBarzel St. 20
    Tel Aviv-Yafo, Israel
    Contact: Prof. Ofer Shpilberg and Roei Mazor, MD
    Telephone: +972-3-7644364
  11. Israel
    Institution: Shaare-Zedek Medical Center
    Location: POB: 3235
    Jerusalem, Israel 91031
    Contact: Chezi Ganzel, MD
    Telephone: 972-2-6666448
  12. Italy
    Institution: San Raffaele Scientific Institute
    Location: Via Olgettina 60
    20132 Milano, Italy
    Contact: Lorenzo Dagna, MD , FACP
    Telephone: +39 02 91751545
  13. Italy
    Institution: University Hospital, Parma
    Location: Via Gramsci 14-43126
    Parma, ITALY
    Contact: Augusto Vaglio, MD
    Telephone: +39 0521 702013
  14. Lebanon - Emerging Care Center
    Institution: American University of Beirut Medical Center
    Location: Hamra Street
    Beirut, Lebanon
    Contact: Ali Bazarbachi MD, PhD
    Telephone: +961-1350000 Ext. 7489
  15. UK
    Institution: St. James’s University Hospital
    Location: Level 3, Bexley Wing
    St. James’s University Hospital
    Beckett Street
    Leeds, LS9 7TF United Kingdom
    Contact: Professor Peter Hillmen, MD & Tal Munir, MD
    Telephone: +44-113-206-8513
  16. UK
    Institution: Newcastle University
    Location: Level 4 NCCC
    Freeman Hospital
    Newcastle upon Tyne
    NE7 7 DN
    Contacts: Matthew Collin, MD or Lucy Manning
    Telephone: +0191 213 8479
US Referral Care Centers
  1. California - Emerging Care Center
    Institution: Stanford University
    Location: 269 Campus Drive, CCSR 1155
    Stanford, CA 94305-5156
    Contact: Beth A. Martin, MD
    Telephone: (866)742-4811 or (650)498-6000
  2. California
    Institution: UC San Diego Moores Cancer Center
    Location: 3855 Health Sciences Drive, MC #0658
    La Jolla, California 92093-0658
    Contact: Razelle Kurzrock, MD
    Telephone: not available
  3. Colorado
    Institution: University of Colorado School of Medicine
    Location: 12631 East 17th Avenue
    Academic Office 1 MS B185
    Aurora, CO 80045
    Contact: Doug Ney, MD
    Telephone: +1-303-724-2184
  4. Florida
    Institution: UF Health Cancer Center- Orlando Health
    Location: 1400 S. Orange Ave.
    Orlando, FL 32806
    Contact: Julio Hajdenberg, MD
    Telephone: +1-321-841-7219
  5. Maryland
    Institution: Johns Hopkins Hospital
    Location: 4940 Eastern Ave., Bldg. 301, Suite 4500
    Baltimore, MD 21224
    Contact: Satish Shanbhag, MD
    Telephone: +1-410-550-1711
    Additional Contact: Nancy Feeley, CRNP
  6. Massachusetts
    Institution: Dana-Farber Cancer Institute
    Location: Mayer 221
    450 Brookline Avenue
    Boston, MA 02215
    Contact: Eric D. Jacobsen, MD
    Telephone: +1-617-632-6633
  7. Minnesota
    Institution: Mayo Clinic
    Location: 200 First St. SW
    Rochester, MN 55905
    Contact: Ronald Go, MD
    Telephone: +1-507-284-5362
  8. Missouri
    Institution: Washington University in St. Louis
    Location: 660 South Euclid Ave, Campus Box 8007
    St. Louis, MO 63110
    Contact: Paul J. Scheel, Jr., MD, F.A.S.N.
    Telephone: +1-314-362-6249
    Contact: Armin Ghobadi, MD
    Telephone: +1-314-454-8323
  9. New York
    Institution: Columbia University Medical Center
    Location: Herbert Irving Pavilion
    Garden Level
    161 Fort Washington Avenue
    New York, NY 10032
    Contact: Mark Heaney, MD, PhD
    Telephone: +1-646-317-5077
  10. New York
    Institution: Memorial Sloan-Kettering Cancer Center
    Location: 1275 York Avenue
    Department of Neurology, Box 52
    New York, NY 10065
    Contact: Eli Diamond, MD
    Telephone: +1-212-639-7576
  11. North Carolina - Emerging Care Center
    Institution: Duke Cancer Institute
    Location: Box 3198 DUMC
    Durham, NC 27710
    Contact: Richard F. Riedel, MD
    Telephone: +1-919-681-6932
  12. Ohio - Emerging Care Center
    Institution: University of Cincinnati
    Location: 231 Albert Sabin Way
    MSB Room 6053, ML 0564
    Cincinnati, OH 45267
    Contact: Nishant Gupta, MD
    Secondary Contact: Clinic Coordinator, Geneva
    Telephone: +1-513-558-4831
    E-mail: E-mail:
  13. Tennessee
    Institution: Vanderbilt University Medical Center
    Location: 1301 Medical Center Drive, 3927
    Nashville, TN 37232
    Contact: Nishitha M. Reddy, MD
    Telephone: +1-615-936-8422
  14. Texas
    Institution: Baylor College of Medicine, Texas Children's Cancer Center
    Location: 6701 Fannin St., Suite 1510
    Houston, TX 77030
    Contact: Kenneth L. McClain, MD, PhD
    Telephone: +1-832-822-4208
  15. Texas
    Institution: The University of Texas MD Anderson Cancer Center
    Location: 1515 Holcombe Blvd. 0455
    Houston, TX 77030
    Contact: Filip Janku, MD, PhD
    Telephone: +1-713-563-0803
  16. Washington - Emerging Care Center
    Institution: Seattle Cancer Care Alliance
    Location: 825 Eastlake Ave.
    Seattle, WA 98109-1023
    Contact: Paul Hendrie, MD, PhD
    Telephone: +1-206-288-6366
Other ECD Knowledgeable Doctors

Last updated: August 16, 2016

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  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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