Mastocytosis specialist

Is there a link for specialists?I would love to find a specialist in New Jersey,or Philadelphia.Thanks

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Hi Joycey

This is the list from the mastocytosis society web page at

Cem Akin, M.D., PhD
Brigham and Women’s Hospital
1 Jimmy Fund Way,
Smith Building Room 626D
Boston , MA 02115
Chestnut Hill, MA 02467
Phone: 617-732-9850
Fax: 617-525-1310

Mariana Castells, M.D., Ph.D.
Brigham and Women’s Hospital
1 Jimmy Fund Way,
Smith Building Room 626D
Boston , MA 02115
Phone: 617-732-9850
Fax: 617-525-1310

Larry Schwartz, M.D., Ph.D.
Internal Medicine: Rheumatology, Allergy, and Immunology
Virginia Commonwealth University
P.O. Box 980263
1250 East Marshall St.
Richmond, VA 23298
Phone: 804-828-9685
Fax: 804-828-0283

Philip Askenase, MD, Chief Section of Allergy and Clinical Immunology
Department of Internal Medicine
Yale University School of Medicine
333 Cedar Street
New Haven CT 06520
Tel 203-785-4143
Fax 203-785-3229

Luis Escribano, M.D., Ph.D / Director
Centro de Estudios de Mastocitosis de Castilla la Mancha (CLMast)
Hospital Virgen del Valle
Carretera de Cobisa s/n
Toledo E-45071 Spain
Phone: +34-925269335

Peter Valent, M.D.
Department of Internal Medicine
Division of Hematology and Hemostaseology
Medical University of Vienna,
Waehringer Guertel 18-20
A-1090 Vienna, Austria
Phone: +43-1 40400 -5488 or -6086
Fax:: +43 1 40400 4030

K. Frank Austen, M.D. (Honorary Board Member)
Astra Zeneca Professor of Respiratory and Inflammatory Diseases,
Department of Medicine
Brigham and Women’s Hospital
Smith Building, Room 638
1 Jimmy Fund Way
Boston, MA 02115
Tel: 617-525-1300
Fax: 617-525-1310

Richard Horan, M.D.
Department of Allergy and Immunology
Brigham and Women’s Hospital
850 Boylston St., Suite 540
Chestnut Hill, MA 02467
Phone: 617-278-0300

Theoharis Theoharides, M.D., Ph.D.
Professor of Pharmacology and Internal Medicine
Tufts University School of Medicine
136 Harrison Avenue
Boston, MA 02111
Phone: 617-636-6866
Fax: 617-636-2456

Srdan Verstovsek, M.D., Ph.D. / Associate Professor
Leukemia Department
MD Anderson Cancer Center
1515 Holcombe Blvd, Unit 428
Houston, TX 77030
Phone: 713-792-7305
Fax: 713-794-4297

Dr. Leonard Bernstein, M.D.
Bernstein Allergy Group
8444 Winton Road
Cincinnati, OH 45231
Phone: 513-931-0775
Fax: 513-984-1096

Joseph Butterfield, M.D.
W15-B Mayo Clinic
200 SW 1st St.
Rochester, MN 55905
Phone: 507-284-9077
Fax: 507-284-0902

Philip B. Miner Jr., M.D
President and Medical Director
Oklahoma Foundation for Digestive Research;
Clinical Professor of Medicine
University of Oklahoma,
College of Medicine
1000 North Lincoln Blvd., Suite 210
Oklahoma City, OK 73104
Phone: 405-271-4644
Fax: 405-271-3296

Your geography will be better than mine as I am in the UK ;-)
They all respond well to emails ;-)
I hope all is well today ;-)

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Where do you live. There arent really specialists in this area but I know several people who are happy with thier doctors and thier doctors are willing to work with the specialists in Boston. I myself go to Fox Chase in Phila but I am thier only patient so I wouldnt recommend that. Let me know if you want these names. Kathie

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I am in Texas but I smiled at your post because my internists office has about 8 doctors and I am their only patient least that has been diagnosed. He read an article in the New England journal that was a case study and he said that he kept thinking...this sounds so familiar....and then remembered me when the trytase element was revealed in the case. He got the diagnosis right! He even copied the article for me. So I think the most important thing is a doc that will listen and is eager to learn and will reach out to specialists. My specialist is in Dallas but I don't think she has gone to any updated conferences in years and was impressed that I went to the one in Boston and brought back all of the new information available. There have been great strides at least in understanding the illness in the last 8 years that I have been following it.

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Hello Cynclair
One of my current specialists is an oncologist that comes to Southern California by way of MD Anderson in Houston. He is the area specialist in masto in that he has two patients with it. He is the one that put me on gleevec after studying my history and consulting with the allergist that I see. They both work at a large care provider in the next town southeast of me. My PCP is part of another large group, but has made it possible for me to see the oncologist and allergist in the other group. It was quite and undertaking to get my insurance to agree to my seeing them, but there is really no one else around that knows much about masto. Before my diagnosis my PCP considered me her mystery patient. She said that if it was ever discovered what my malady is she would be writing a paper about me. Don't know that she ever did. I feel very fortunate since the bulk of masto specialists are far to the east of me. It's great having doctors that are willing to spend the time to get to know me and my disease.
I've babbled on long enough. My best to all. Dale

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