護理中心
ECD 護理中心
ECD護理中心網路可説明患者找到知識淵博的醫生來確認診斷並提供治療和持續護理。許多患者經常經歷從癥狀出現到診斷的漫長延遲。我們理解等待對患者及其家人來說非常困難。很多時候，如果患者的醫療團隊告訴患者他們沒有治療 ECD 的經驗，那麼診斷後困難可能會繼續存在。我們 ECDGA 相信，護理中心的確定將有助於患者在他們所在地區尋找對治療 ECD 患者感興趣和瞭解的醫療團隊。
照顧 ECD 患者很複雜，需要一個專家團隊通力合作。有許多機構致力於擁有一支專家團隊，為 ECD 患者提供最好的護理。這個 ECD Care 轉診中心網路可以説明 ECD 患者，並將與患者的當地醫療團隊合作。敦促患者和當地醫生聯繫這些中心的聯繫人，以尋求診斷、治療和監測 ECD 患者的説明。
通常情況下，患者無法前往 ECD 護理中心。在這種情況下，患者可能需要離家近的醫生，該醫生瞭解 ECD 和 ECD 患者的護理。
ECDGA Patient Navigator 可以訪問有關護理中心之外熟悉 ECD 的醫生的資訊。如果您是患者或家庭成員，並且需要有關護理中心以外的醫生的資訊，請聯繫我們。
ECD 護理中心：轉診中心和新興中心。
ECD轉診護理中心是指該機構或該機構的醫生已經治療了五名或更多ECD 患者的中心。這些中心願意並能夠開出 ECD 治療處方。每個中心的主任醫師願意就其他中心的 ECD 病例提供正式或非正式的諮詢，但要遵守與進行這些諮詢相關的當地政策和程式。這些中心還擁有一名熟悉 ECD 異質性組織病理學表現的病理學家，他們願意合作處理 ECD 病例。
ECD新興護理中心（ECD Emerging Care Center）是指對照顧ECD患者感興趣，但尚未治療五名或更多ECD患者的機構。我們鼓勵任何有興趣將其機構確定為轉診或新興護理中心的醫療專業人員聯繫該組織。
| Non-US Referral Care Centers | 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 | 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 |
| 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 | 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) |
| 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 | 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 |
| 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 | 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 |
| Belgium Institution: University Hospilal Leuven Location: Hereslraat 49, 3000 Leuven, Belgium Contact: Sherida Woei-A-Jin, MD Telephone: +32 346903 | 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 Contact: Samuel Reynolds, MD Telephone: +1-813-745-8212 E-mail: sam.reynolds@moffitt.org |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 | 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 |
| 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 |
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最後更新： 02/27/25