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Addresses
For free information from the government, try:
1) 1-800-FOR-CANCER. This is the NCI info-line.
2) National Heart, Lung & Blood Institute. The institute's address is NHLBI, National Institutes of Health, Building 31, Room 4A-21, 9000 Rockville Pike, Bethesda, Md. 20892. Telephone: 301 251 1222.
3) National
Organization for Rare Diseases (NORD)
PO Box 8923
New Fairfield CT
06812-1783
800-999-6673 or 203-746-6518
They have a network of people with
rare diseases. This is especially useful
for people who do not have a
computer. One member received a list of about 26 people who have been dx with
ET. They maintain an information sheet on a large number of rare
diseases.
4) Dr. Harriet Gilbert, 950 Park Avenue (East 82nd
Street and Park Avenue)
New York, NY 10028 212 535 4200 fax212 535 7744
1-800-HELP-MPD This reaches Dr. Harriett Gilbert's myeloproliferative disorder
group. She is a hematologist in private practice in NYC.
5) Dr. Richard Silver, Dr. Greg Berk, 1440 York Ave,
Suite P-4, NYC 10021
212 288 5040. Dr. Silver is affiliated with Cornell
University and has written extensively on using interferon in the treatment of
polycythemia and essential thrombocythemia.
The following two addresses also list hematologists involved in MPD research. Donations are accepted and should be specified as to the area of research desired (i.e. PV, AMM, etc.).
6) Dr. Stephen D. Nimer, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, New York, NY 10021, 212-639-7871.
7) Dr. Jerry Spivak, Hematology Division, Johns Hopkins University, School of Medicine, Traylor Bldg., Room 924, Baltimore, Maryland 21205. Fax: 410-955-0185. Phone: 410-955-5454.
8) Association Euro-Vaquez, 12 Rue Merlin, 75011 Paris, France. phone: 01 43 79 27 48. e-mail: vaquez@wanadoo.fr (This is a European organization of patients and professionals interested in research and concerns of polycythemia vera.)
The government offices will both send you out good but somewhat dated information. Most research you might read will be outdated. Take any and all older mortality estimates with a grain of salt. They are outdated. There are people diagnosed years earlier with PV or ET now living active lives into their eighties and beyond.
The following hematologists were listed in
American Health Magazine some
months back as the top USA hem/onc docs that
other docs would use for
themselves or family members (excepting Dr. Prchal
who wrote to us asking to
be included in our list). Maybe there is one listed
in a city near you. I
hope this information is helpful to
you.
Hematology/oncology
Richard T. Silver
NY-Cornell
Ed Amorosi NYU
James Armitage Nebraska
Bart Barlogie
Ark
William Bell Hopkins
Karl Blume Stanford
Geo. P. Canellos
Dana-Farber
James Crowley Rhode Island
Vincent T. DeVita, Jr.
Yale
Richard Fisher Loyola
Stephan Forman City of Hope
Geoffrey Herzig
Roswell Park
Michael Keating UT Anderson
Robert J. Mayer Dana-Farber
C.
Julian Rosenthal LICH
Charles Schiffer Detroit
Peter Wiernik
Einstein-Montefiore
Karen Antman Columbia-Pres.
John H. Glick U of
Penn
Sandra J. Horning Stanford
David Johnson Vanderbuilt
Nancy Kemeny
Sloan-Kettering
Robert B. Livingston Washington
John Macdowald
Temple
Anne Moore NY-Cornell
Larry Norton Sloan-Kettering
C. Kent
Osborne UT San Antonio
Robert Ozols Fox Chase
Derek Raghavan Roswell
Park
Saul Rosenberg Stanford
Howard Scher Sloan-Kettering
James L.
Speyer NYU
Everett Vokes Chicago
Robert Young Fox Chase
Josef Prchal
Baylor Houston