The Doctors

I have or think I might have MCAS. Where can I find a specialist?

There are more and more doctors who are learning about this rare, debilitating immunological disease every day so it is getting easier to find help (thankfully!) and there are a few specialists scattered around the world, which I’ve listed below.

However, these specialists can be difficult to get to logistically for those of us who are really ill. My first recommendation is to have your local doctor (immunologist, gastroenterologist, hematologist) contact one of the consulting specialists at tmsforacure.org. They can guide them on what to do in your specific case.

I’ve posted just the doctors in the United States here who treat all forms of mast cell disease for easy reference):

United States of America


CALIFORNIA
Stanford Cancer Center
875 Blake Wilbur Drive, Room 2327B
Stanford, CA 94305-5821
Contact: Jason Gotlib MD, Assistant Professor of Medicine (Hematology)
Email:jason.gotlib@stanford.edu
Phone: 650-736-1253 Fax: 650-724-5203
Specialization: Biopsy proven only: including systemic mastocytosis(SM) only, aggressive SM and mast cell leukemia. Adults. Diagnostic, treatment and research.

MARYLAND

National Institutes of Health: National Institute of Allergy and Infectious Diseases NIH, NIAID
Building 10, Room 11C207
10 Center Drive – MSC1881
Bethesda, MD 20892-1881
Contact: Dean D. Metcalfe, MD, Chief, Laboratory of Allergic Diseases
Email: dmetcalfe@niaid.nih.gov
Phone: 301-496-2165 Fax: 301-480-8384
Contact: Todd Wilson, DO
Email: twilson@niaid.nih.gov
Contact: Melody Carter, MD, Pediatrics
Email: mcarter@niaid.nih.gov
Specialization: Referrals only. Biopsy proven only; including systemic mastocytosis(SM) only, aggresssive SM and mast cell leukemia. Adults and pediatrics. Diagnostic, treatment and research. Bone marrow biopsies. Also adult idiopathic anaphlaxis.

 

MASSACHUSSETTS
Center of Excellence for Mastocytosis (and Mast Cell Activation Disorders) at Brigham and Women’s Hospital and Dana Farber Cancer Institute
850 Boylston Street, Suite 450
Chestnut Hill, MA 02467
Director: Cem Akin, MD, PhD
Email: cakin@partners.org
Phone: 617-732-9850 Fax: 617-731-2748
Associate Director: Mariana Castells, MD, PhD
Email: mcastells@partners.org
Phone: 617-732-9850 Fax: 617-731-2748
Contact: Norton J. Greenberger, MD, GI
Email: ngreenberger@partners.org
Phone: 617-732-6389 Fax: 617-264-5277
Contact: Richard Horan, MD
Email: rhoran@partners.org
Phone: 617-732-9850 Fax: 617-731-2748
Contact: Daniel DeAngelo, MD, PhD
Email: daniel_deangelo@dfci.harvard.edu
Phone: 617-632-6028
Address: DRCI, 450 Brookline Ave, Dana D1B30, Boston, MA 02215
Specialization: All mast cell related diseases including mast cell activation disorders. Adults and pediatrics. Diagnostic, treatment and research. Can arrange bone marrow biopsies.

Tufts University School of Medicine
136 Harrison Avenue
Boston, MA 02111
Contact: Theoharis Theoharides, MD, PhD, Professor of Pharm. and Internal Medicine
Email: Theoharis.Theoharides@Tufts.edu
Phone: 617-636-6866 Fax: 617-636-2456
Specialization: All mast cell related diseases including mast cell activation disorder. Diagnostic, treatment and research. Can arrange bone marrow biopsies. Extensive research in the neurological effects of mast cell degranulation.

 

MINNESOTA
Mayo Clinic – Allergy Department
W15-B Mayo Clinic
200 SW 1st Street
Rochester, MN 55905
Contact: Joseph Butterfield, MD
Email: butterfield.joseph@mayo.edu
Contact: Catherine Weiler, MD, PhD
Phone: 507-284-9077 Fax: 507-284-0902

Mayo Clinic Hematology Department
Contact: Ayalew Tefferi, MD and Animesh Pardanani, M.B.B.S., PhD
Phone: 507-284-5363
Specialization: All mast cell related diseases, including mast cell activation disorder. Adults and pediatrics. Diagnostic, bone marrow biopsy, treatment and research.

 

OHIO
University of Cincinnati and Bernstein Allergy Group and Research Center
8444 Winton Rd.
Cincinnati, OH 45231
Contact: Jonathan Bernstein, MD
Email: bernstja@ucmail.uc.edu
Phone: 513-931-0775 Fax: 513-981-0779
Specialization: All mast cell related diseases, including mast cell activation disorder. Adults and pediatrics. Diagnostic, treatment and research. Can arrange bone marrow biopsy. Private family practice.

 

OKLAHOMA
University of Oklahoma, College of Medicine
1000 North Lincoln Blvd, Suite 210
Oklahoma City, OK 73104
Contact: Philip B Miner Jr., MD, Clinical Professor of Medicine, President and Medical Director, Oklahoma Foundation for Digestive Research
Email: brenda-free@ouhsc.edu
Phone: 405-271-4644 Fax: 405-271-3296
Specialization: Gastroenterology as it relates to mast cell related diseases including mast cell activation disorder.

 

TEXAS
MD Anderson Cancer Center
1515 Holcombe Blvd, Unit 428
Houston, TX 77030
Contact: Srdan Verstovsek, MD, PhD, Associate Professor, Leukemia Department
Email: sverstov@mdanderson.org
Phone: 713-792-7305 Fax: 713-794-4297
Specialization: Systemic mastocytosis (SM) only, aggressive SM, and mast cell leukemia. Adults. Diagnostic, treatment and research.

 

UTAH
The University of Utah School of Medicine, Department of Internal Medicine, Hematology Division
30 N 1900 E, Room 5C402
Salt Lake City, UT 84132
Contact: Michael Deininger, MD, PhD
Phone: 801-585-3229
Email: michael.deininger@hsc.utah.edu
Specialization: Bone marrow biopsy confirmed mastocytosis, aggressive disease, and mast cell leukemia.

 

VIRGINIA
Virginia Commonwealth University
PO Box 980263, 1250 East Marshall Street
Richmond, VA 23298
Contact: Larry Schwartz, MD, PhD, Internal Medicine: Rheumatology, Allergy and Immunology
Email: lbschwar@vcu.edu
Phone: 804-828-9685 Fax: 804-828-0283
Specialization: All mast cell related diseases including mast cell activation disorder. Adults and pediatrics. Diagnostic, treatment, and research. Can arrange bone marrow biopsies.