Physician Resource Guide

A growing number of physicians have familiarity with DC and Telomere Biology Disorders. The doctor list on this web site is by no means inclusive nor is it endorsed by DC Outreach, Inc. However, each entry has direct, working knowledge of the condition. We hope to regularly update the list and encourage suggestions. 

Please e-mail our president, katiestevens@dcoutreach.org with any physician names and contact information.

Editor’s Note and Disclaimer:  This resource guide is by no means comprehensive and inclusion on the list does not imply any endorsement by DC Outreach, Inc.  A growing number of physicians have familiarity with DC. Not every physician is a specialist in DC, however, each doctor listed here has direct, working knowledge of the condition. We hope to regularly update the list and encourage suggestions.  Please contact us with any names and contact information.
 
Just Diagnosed?
NCBI (the National Center for Biotechnology Information) and Genetic Alliance have teamed to produce this great website which offers a tremendous amount of information all about Dyskeratosis Congenita.  Please take a moment to visit some of the links on this site.
 
Bone Marrow Failure 
The National Cancer Institute (Bethesda, MD) under the leadership of Blanche P. Alter, M.D., M.P.H. is sponsoring the largest North American study of its kind to focus on people with rare inherited bone marrow failure syndromes (IBMFS) and their family members. This large group or cohort, is call the NCI IBMFS Cohort. For more information: 1-800-518-8474, email: lisaleathwood@westatat.com
 
The Children’s Hospital of Philadelphia has a pediatric bone marrow failure center headed up by Tim Olson, M.D.. Families can go there to “establish a comprehensive treatment plan, receive a diagnosis or get a second opinion.”
1-800-879-2467 (1-800-TRY-CHOP)
 
Tim Olson, M.D.
Buck Family Professor in Hematology
Professor in Pediatrics and Internal Medicine
Director, Pediatric & Adult Comprehensive Bone Marrow Failure Center
The Children’s Hospital of Philadelphia and
The Hospital of the University of Pennsylvania
University of Pennsylvania School of Medicine
3615 Civic Center Blvd, Abramson Research Center Rm 302
Philadelphia PA 19104
 
With improved therapy and with the availability of genetic testing an increasing number of patients with inherited bone marrow failure syndromes become adults. Dr. Daria Babushok, M.D., Ph.D trained as an adult hematologist, sees adult patients with bone marrow failure with a particular interest in pediatric-adult transition as well as the manifestation care and treatment of bone marrow failure in the adult.
Appointments for adult patients:
Penn Blood Disorder Center
3400 Spruce Street, 3rd Floor Dulles
Philadelphia, PA 19104
Phone: (215) 615-6555
Fax: (215) 615-6599
 
Alison Bertuch, MD, PhD
Director, Bone Marrow Failure Program
Associate Professor, Baylor College of Medicine
Department of Pediatrics, Hematology/Oncology Section
Texas Children’s Cancer and Hematology Centers, Texas Children’s Hospital
Tel: 832-824-4579
FAX: 832-825-4651
 
​www.BMTinfonet.org  Blood and Marrow Transplant Information Network
For answers, advice and a caring companion throughout your transplant journey
1888-597-7674
 
Telomere Testing Facilities
 
Geraldine Aubert, PhD
Repeat Diagnostics Inc.
309-267 West Esplanade Ave.
North Vancouver, BC V7M 1A5
T. 604-985-2609
F. 778-340-1144
 
Gabriela Baerlocher, MD
Department of Hematology
University Hospital Bern
3010 Bern
Switzerland
++41 31 632 33 06
 

Transplant Doctors/Centers

Assistant Professor of Pediatrics, Harvard Medical School
Staff Physician, Hematopoietic Cell Transplantation
Boston Children’s Hospital
CLS 3002, 3 Blackfan Circle
Boston, MA 02115
Phone: (617) 919-3242
Fax: (617) 919-3359
Dr. Agarwal is conducting an active BMT trial specifically for DC. Please see our clinical trial section for more info.
 
Farid Boulad MD
Medical Director, Pediatric Day Hospital
Bone marrow transplant service
Memorial Sloan Kettering Cancer Center
New York City, NY
212-639-6684
 
Andrew C. Dietz, MD, MSCR
Assistant Professor of Pediatrics, USC Keck School of Medicine
Attending Physician, Pediatric Blood and Marrow Transplantation
Children's Hospital Los Angeles
4650 Sunset Blvd, #54
Los Angeles, CA 90027
Phone:  323-361-2546
Fax:        323-361-8068
 
Frederick T. Goldman, MD
Professor of Pediatrics
Director, Blood and Marrow Transplant Program
Division of Hematology Oncology
The Children’s Hospital of Alabama
ACC 512
1600 7th Ave S
Birmingham AL 35233
205.939.5855
 
Shakila Khan, MD
Associate Professor of Pediatrics
Department of Pediatric Hematology/Oncology, has expertise with transplant as well
Mayo Clinic
200 First Street, SW
Rochester, MN
 
Leslie E. Lehmann, MD
Director, Clinical Pediatric Stem Cell Transplantation Center
Assistant Professor of Pediatrics, Harvard Medical School
Dana-Farber Cancer Institute
450 Brookline Ave.
Boston, MA 02215
Office phone: 617-632-4923
Appointment phone: 888-733-4662
Fax: 617-632-2095
 
Mrinal Patnaik, MBBS, MD
Assistant Professor of Internal Medicine and Oncology
Director, Pre-myeloid Cancer and Inherited Bone Marrow Failure Clinic
Mayo Clinic
200 First Street, SW
Rochester, MN
 
Jeffrey M. Lipton, MD, PhD
Chief of Hematology/Oncology and Stem Cell Transplantation
Steven and Alexendra Cohen Children's Medical Center of New York
26901 76th Avenue
New Hyde Park, NY 11040
(718) 470-3470
jlipton@lij.edu
 
 
 
Jakub Tolar, M.D., Ph.D.
Albert D. and Eva J. Corniea Chair
Director, Stem Cell/Gene Therapies
Associate Professor
Blood and Marrow Transplantation, Department of Pediatrics
University of Minnesota
Minneapolis, MN
612-625-2912 — office
Lab phone: 612-624-4975
 

Hematologists/ Oncologists

Assistant Professor of Pediatrics, Harvard Medical School
Staff Physician, Hematopoietic Cell Transplantation
Boston Children’s Hospital
CLS 3002, 3 Blackfan Circle
Boston, MA 02115
Phone: (617) 919-3242
 
Murat O. Arcasoy, M.D.  F.A.C.P.
Associate Professor
Dept. of Medicine, Duke Cancer Institute
Hmatology-Medical Oncology
Box DUMC #3912
244 Sands Building
Durhan, NC 27710
Phone: 919-684-5350
Fax: 919-681-6160
 
Mary Armanios, M.D.
Associate Professor of Oncology
Contact Information
Department of Oncology
Cancer Research Building (CRB I) Room 186
Baltimore, MD. 21287
Lab: Room 607, Preclinical Teaching Building
410-502-3817 (Office) 410-502-6240 (Fax)
 
Steven E. Artandi, MD, PhD*
Professor, Department of Medicine, Department of Biochemistry
269 Campus Drive
CCSR 1155, MC5156
Stanford, CA, 94305-5156
Phone:  650-736-0975
Fax:  650-736-0974
 
 
Brian W. Berman, M.D.
Beaumont Pediatric Hematology and Oncology Center
3577 W. 13 Mile Rd. #101
Royal Oak, MI 48073-6769
Phone: 248-551-0360
Fax: 248-551-8865
 
Alison Bertuch, M.D., Ph.D.
Department of Pediatrics
Baylor College of Medicine
One Baylor Plaza
Houston, TX 77030
Telephone: (832) 824-4579
 
Deborah Chirnomas, MD, MPH*
Assistant Professor of Pediatrics (Hematology/Oncology); Director,
Pediatric Bone Marrow Transplant Program
Yale Pediatric Hematology & Oncology
Smilow Cancer Hospital at Yale – New Haven
South Frontage Road and Park Street
7th floor
New Haven, CT 06510
Phone:  (203) 785-4640
Fax:  (203) 737-2228
 
Seth Corey, MD MPH
Chief, Division of Hematology, Oncology and Stem Cell Transplantation
Children’s Hospital Foundation Professor of Pediatric Cancer Research
Co-Leader, Cancer Molecular Genetics
VCU Massey Cancer Center & Children’s Hospital of Richmond
PO Box 980037
401 College Street
Richmond, VA 23298
Office: 804-628-5094
Lab: 804-628-5111
Admin Asst: Sharon Levine, 804-628-0379f
website: coreylab.org
 
Fred Goldman, MD*
Professor of Pediatrics, Director, Lowder Stem Cell Transplant Program
512 Lowder Building
1600 7th Ave.South
Birmingham, AL  35233
Phone:  205-638-9285
Fax:  205-975-1941
 
Professor Inderjeet Dokal
Chair of Paediatrics and Child Health
Honorary Consultant in Haematology
Centre for Paediatrics
Blizard Institute
Barts and The London School of Medicine and Dentistry
Queen Mary University of London
4 Newark Street
London E1 2AT
Tel: +44(0)20 7882 2205
Fax: +44(0)20 7882 2195
 
Shakila Khan, MD
Associate Professor of Pediatrics
Department of Pediatric Hematology/Oncology
Mayo Clinic
Rochester, MN
 
Associate Professor of Pediatrics
Harvard Medical School
Dana-Farber/Boston Children's Cancer and Blood Disorders Center
Boston Children's Hospital
300 Longwood Avenue
Boston, MA 02115
Tel 617-919-6109
Fax: 617-730-0934
 
​David Wilson, MD, PhD
Division of Pediatric Hematology-Oncology
Washington University School of Medicine
St. Louis Children’s Hospital
1 Children’s Place
St. Louis, MO 63110 USA
314-454-6018 (clinic office)
 
Fred Hutchinson Cancer Reasearch Center
Seattle, WA
(855) 557-0555
 

Dermatology 

Leah Belazarian. MD
Assistant Professor of Medicine & Pediatrics
Division of Dermatology
Hahnemann Campus
281 Lincoln Street
Worcester, MA
Phone # 508-334-5979
 
Dentistry
Nathaniel S. Treister, DMD, DMSc
Division of Oral Medicine & Dentistry
Brigham and Women’s Hospital
1620 Tremont Street, Suite BC-3-028
Boston, MA 02120
phone: 617-732-6570
clinic: 617-732-6974
fax: 617-232-8970
 
Justin A. Shuffer, D.D.S. *
Specialist in Pediatric Dentistry
150 W. Foothill Blvd, Suite E
San Dimas, CA 91773
phone: 909-599-0283
direct email: Bruinpedo@gmail.com
 

ENT

Dr. Joseph Califano
UC San Diego Health - La Jolla
Moores Cancer Center
3855 Health Sciences Drive
La Jolla, CA  92093
 
 

 

 

 
Opthalmology
Khaled A. Tawansy, MD, FAAO, FACP *
Assistant Professor of Opthalmology
Pediatric Vitreo Retinal Surgery, Ocular Trauma, Uveitis
Children's Retina Institute
7447 N. Figueroa Street
Los Angeles, CA 90041
phone: 323-257-eyes (3937)
fax: 323-257-3200
pager: 888-246-1519
mobile: 323-313-5757
 

Pulmonology

Alicia Casey, M.D.
Co-Director, Interstitial Lung Disease Program
Boston Children’s Hospital
Office Phone: 617-355-1900
 
Harold Collard, M.D.
University of California San Francisco
Interstitial Lung Clinic
400 Parnassus, Fifth Floor
San Francisco, CA 94143
Office Phone: (415) 353- 2577
 
Sonye Danoff, M.D.

Johns Hopkins Outpatient Center
Appointment Phone: 410-955-3467

601 N. Caroline St.
Baltimore, MD 21287

http://www.hopkinsmedicine.org/research/labs/sonye-danoff-lab

 
 
Souheil El-Chemaly, MD, MPH
Associate Physician
Division of Pulmonary and Critical Care Medicine
Brigham and Women’s Hospital
75 Francis Street,
Boston, MA 02115
Phone: 617-732-7420
Fax: 617-732-7421
 
Ivan Rosas, M.D.
Brigham and Women's Hospital
Department of Medicine
Pulmonary
75 Francis Street
Boston, MA 02115
 

  

Christine Garcia, M.D.,Ph.D.

Associate Professor
Eugene McDermott Center for Human Growth & Development, Internal Medicine
UT Southwestern Medical Center
5323 Harry Hines Boulevard
Dallas, Texas 75390
 
 
​David J. Lederer MD, MS
Irving Assistant Professor
Division of Pulmonary, Allergy and Critical Care Medicine
622 W. 168th St. PH. 14-104
New York, NT 10032
212-305-6589 Tel
213-342-5382 Fax
 

Lung Transplant

 
Hilary Goldberg, MD
Brigham and Women's Hospital, Pulmonary Division, Clinic 3
75 Francis Street
Boston, MA 02115
Phone (61& 732-7420
 
Gary Visner, D.O.
Medical Director, Pediatric Lung Transplantation Program
Boston Children’s Hospital
Office Phone: 617-355-1900
 
 
*These are doctors who have offered to be resources to other doctors as well.  Should your own physician need advice they may contact these doctors.