International ECD Care Centers

A network of ECD Care Centers is available to help 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 is 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: Referral Center and an Emerging Center.

An ECD Referral Care Center is one where the institution or a physician at the institution has treated five 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 five 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.

Non-US Referral Care Centers Argentina Institutions: FLENI Location: MONTAÑESES 2325 Buenos Aires Argentina Contact: Blanca Diez Telephone: +54 11 57773200 2040 E-mail: bdiez@fleni.org.ar Australia Institutions: Peter MacCallum Cancer Centre and Royal Melbourne Hospital Location: 305 Grattan St. Melbourne, Victoria Australia, 3000 Contact: Michael Dickinson, MD Telephone: +61385599500 E-mail: michael.dickinson@petermac.org 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 E-mail: Michael.Girschikofsky@ordensklinikum.at Belgium – Emerging Care Center Institution: Université Libre de Bruxelles, Hopital Erasme Location: 808, route de Lennik 1070 Anderlecht Belgium Contact: Pr. Benoit Vokaer Email: Benoit.Vokaer@Erasme.ulb.ac.be Belgium Institution: University Hospilal Leuven Location: Hereslraat 49, 3000 Leuven, Belgium Contact: Sherida Woei-A-Jin, MD Telephone: +32 346903 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 E-mail: Andre.Abdo@hc.fm.usp, Julianapereira29@hotmail.com, Rocha.vanderson@hotmail.fr Canada – 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 Canada 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 China Institution: Peking Union Medical College Hospital Location: Shuaifuyuan 1# Beijing, China Contact: Xin-xin Cao, MD Telephone: Not Available. E-mail: caoxinxin@pumch.cn 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 E-mail: julien.haroche@aphp.fr 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 E-mail: achille.aouba@gmail.com France Institution: Dijon University Hospital Location: 14 rue Paul Gaffarel. 21000 Dijon Contact: Jerome Razanamahery Telephone: +33 3 80 29 34 32 E-mail: jerome.razanamahery@chu-dijon.fr or razanamahery.jerome@hotmail.fr Greece Institution: 251 Hellenic Air Force & VA General Hospital Location: 3 Kanellopoulou St 11525 Athens Greece Contact: Polyzois Makras, MD, PhD Telephone: +30 210 7463686 E-mail: info@adultlch.gr Israel Institution: Assuta Medical Center Location: HaBarzel St. 20 Tel Aviv-Yafo, Israel Contact: Prof. Ofer Shpilberg, MD, and Roei Mazor, MD, Telephone: +972-3-7644364 E-mail: hematologyrec@assuta.co.il Israel Institution: Shaare-Zedek Medical Center Location: POB: 3235 Jerusalem, Israel 91031 Contact: Chezi Ganzel, MD Telephone: 972-2-6666448 E-mail: ganzelc@szmc.org.il Italy Institution: San Raffaele Scientific Institute Location: Via Olgettina 60 20132 Milano, Italy Contact: Lorenzo Dagna, MD , FACP Telephone: +39 02 91751545 E-mail: lorenzo.dagna@unisr.it Italy Institution: AOU Meyer Location: Via G. Pieraccini 24 Firenze, ITALY Contact: Augusto Vaglio, MD Telephone: +39 32 00265325 E-mail: augusto.vaglio@unifi.it 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 E-mail: bazarbac@aub.edu.lb The Netherlands Institution: Erasmus University Medical Center Location: Doctor Molewaterplein 40, 3015 GD Rotterdam Contact: JAM van Laar, MD Telephone: +31650033587 E-mail: j.vanlaar@erasmusmc.nl Saudi Arabia – Emerging Care Center Institution: King Faisal Specialist Hospital and Research Centre Location: Riyadh Contact: Mossaed Alyahya, MBBS Telephone: + 966533288335 E-Mail: Alyahyamd@gmail.com or Malmossaed@kfshrc.edu.sa Saudi Arabia – Emerging Care Center Institution: King ABDULAZIZ Medical CITY Location: Riyadh Saudi Arabia Contact: Hind Salama, MD Email: salamahe@ngha.med.sa Spain Institution: Hospital Universitari de Bellvitge Location: Feixa Llarga sn. 08907 L’Hospitalet de Llobregat Barcelona, Spain Contact: Xavier Solanich, MD Email: xsolanich@bellvitgehospital.cat 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: Tal Munir, MD Phone: +44-113-206-8513 Email: tmunir@nhs.net 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 E-mail: matthew.collin@ncl.ac.uk, lucy.manning2@nhs.net

US Referral Care Centers Alabama Institution: University of Alabama at Birmingham O’Neal Comprehensive Cancer Center Location:2000 6th Avenue South Birmingham, AL 35294 USA Contact: Gaurav Goyal, MD Telephone: +1-205-934-5077 E-mail: ggoyal@uabmc.edu California – Emerging Care Center Institution: Stanford University Location: 269 Campus Drive, CCSR 1155 Stanford, CA 94305-5156 Contact: Beth A. Martin, MD Telephone: +1-866-742-4811 or +1-650-498-6000 E-mail: Martinb@stanford.edu (Please contact the ECDGA at support@erdheim-chester.org for more information) California Institution: UC San Diego Moores Cancer Center Location: 3855 Health Sciences Drive, MC #0658 La Jolla, California 92093-0658 Contact: Aaron Goodman, MD Telephone: +1-858-822-6600 E-mail: A1goodman@ucsd.edu 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 E-mail: douglas.ney@ucdenver.edu Florida Institution: Moffitt Cancer Center Location: 12902 USF Magnolia Drive Tampa, FL 33612 Contact: Lubomir Sokol, MD Telephone: +1-813-745-8212 E-mail: lubomir.sokol@moffitt.org Florida – Emerging Care Center Institution: University of Florida Health, Gainesville Location: 1600 SW Archer Rd, M452 Gainesville, FL 32610 Contact: Ali Ataya, MD Telephone: +1-352-273-8740 E-mail: Ali.ataya@medicine.ufl.edu Maryland Institution: Johns Hopkins Hospital Location: 1830 E. Monument Street, Suite 416 Baltimore, MD 21205 Contact: Mohamed G. Atta, MD Telephone: +1-410-955-5268 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 E-mail: edjacobsen@partners.org Michigan Institution: University of Michigan Location: 1500 East Medical Center Dr. Ann Arbor, MI 48109 Contact: Asra Ahmed, MD Telephone: +1-734-647-8901 E-mail: aahmed@umich.edu Minnesota Institution: Mayo Clinic Location: 200 First St. SW Rochester, MN 55905 Contact: Ronald Go, MD Telephone: +1-507-284-5362 E-mail: go.ronald@mayo.edu 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 E-mail: scheelp@wustl.edu Contact: Armin Ghobadi, MD Telephone: +1-314-454-8323 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: +1-212-610-0243 E-mail: diamone1@mskcc.org 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 E-mail: richard.riedel@duke.edu Ohio Institution: University of Cincinnati Location: 231 Albert Sabin Way MSB Room 6053, ML 0564 Cincinnati, OH 45267 Contact: Robert Franklin, MD Secondary Contact: Clinic Coordinator, Geneva Telephone: +1-513-305-2096 E-mail: franklro@ucmail.uc.edu E-mail: meyersgk@ucmail.uc.edu 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 E-mail: klmcclai@txch.org Texas – Emerging Care Center Institution: UT Southwestern Medical Center Location: 5323 Harry Hines Blvd., Dallas, TX 75390 Contact: Praveen Ramakrishnan Geethakumari, MD, MS Telephone: +1-214-648-2003 E-mail: Praveen.ramakrishnan@utsouthwestern.edu Washington – Emerging Care Center Institution: Fred Hutchinson Cancer Center Location: 1100 Fairview Ave N Seattle, WA 98109 Contact: Paul Hendrie, MD, PhD Telephone: +1-206-288-6366 E-mail: phendrie@fredhutch.org

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