Home / Rare Diseases / Polycythemia Vera

Polycythemia Vera

Last updated: 11/16/2023

Years published: 1986, 1990, 1994, 1995, 1997, 1998, 2005, 2008, 2011,
2013, 2016, 2018, 2023

Acknowledgment
NORD gratefully acknowledges Ayalew Tefferi, MD, Professor of
Medicine and Hematology, Mayo Clinic, for assistance in the
preparation of this report.

DISEASE OVERVIEW
Summary

Polycythemia vera is a rare, chronic disorder involving the

overproduction of blood cells in the bone marrow (myeloproliferation).
The overproduction of red blood cells is most dramatic, but the
production of white blood cells and platelets are also elevated in most
patients.
Terms of Service Since
& Privacy red blood cells are overproduced in the marrow, this
Policy
leads to abnormally high numbers of circulating red blood cells (red
By continuing to use this website, you agree to the Terms of Service & Privacy
Policy blood mass) within the blood. Consequently, the blood thickens and I Agree
increases in volume, a condition called hyperviscosity. Thickened blood
may not flow through smaller blood vessels properly. A variety of
symptoms can occur in individuals with polycythemia vera including
nonspecific symptoms such as headaches, fatigue, weakness, dizziness
or itchy skin; an enlarged spleen (splenomegaly); a variety of
gastrointestinal issues; and the risk of blood clot formation, which may
prevent blood flow to vital organs. More than 90 percent of individuals
with polycythemia vera have a variant (mutation) in the JAK2 gene. The
exact role these variants play in the development of polycythemia vera
is not yet known. Privacy - Terms
 Introduction

Polycythemia vera was first reported in the medical literature in 1892.

The term “myeloproliferative disorder” (MPD) was first used to describe
polycythemia vera and related disorders in 1951. In 2008, the World
Health Organization reclassified MPDs to “myeloproliferative
neoplasms” (MPNs) to reflect the consensus that these diseases are
blood cancers (neoplasms). This group of disorders is characterized by
the overproduction (proliferation) of one or more of the three main
blood cell lines – red or white blood cells or platelets. Red blood cells
carry oxygen to the body. White blood cells fight infection. Platelets
are involved in clotting of the blood in response to injury. Three other
disorders are commonly classified as MPNs: chronic myeloid leukemia,
essential thrombocythemia and idiopathic myelofibrosis. Because
MPNs are characterized by uncontrolled cell growth, they may also be
classified as blood cancers.

SYNONYMS
erythremia
Osler-Vaquez disease
polycythemia rubra vera
primary polycythemia
splenomegalic polycythemia
Vaquez-Osler disease
Terms of Service & Privacy Policy

By continuing to use this

SIGNS website, you agree to the Terms of Service & Privacy
& SYMPTOMS
Policy I Agree
The symptoms of polycythemia vera usually develop slowly over many
years. Often, the disorder is found incidentally on a blood test as part
of a routine exam before noticeable symptoms occur. Occasionally,
affected individuals may report vague, nonspecific symptoms that
eventually lead to diagnosis of the disorder.
Many individuals with polycythemia vera slowly development a variety
of general, nonspecific symptoms that are common to many disorders
such as headaches, fatigue, weakness, dizziness, excessive sweating
especially at night and itchy skin that, in severe cases, may be worse
 after taking a shower or a warm bath. Additional symptoms may occur
in some affected individuals including blurred vision, ringing in the ears
(tinnitus) and abnormal redness of the skin especially on the face.
Eventually, the spleen becomes involved. The spleen is an organ
located in the upper left part of the abdomen that filters out worn out
blood cells. It often becomes abnormally enlarged in individuals with
polycythemia vera as it attempts to clear a greater number of blood
cells than normal – a condition called splenomegaly. Splenomegaly may
cause an affected individual to have a bloated or full feeling in the
abdomen.
Less common symptoms associated with polycythemia vera include a
tendency to bruise easily, frequent nosebleeds or bleeding from the
gums, enlargement of the liver (hepatomegaly) and erythromelalgia, a
condition characterized by a reddened or purplish appearance to the
skin of the hands and feet. The skin may feel warm to the touch.
Erythromelalgia can also cause a painful, burning sensation or swelling
of the affected areas.
Some individuals with polycythemia vera may develop symptoms
secondary to reduced blood flow (due to thickening of the blood) and
abnormalities affecting the platelets, which can increase a person’s risk
of developing blood clots. Complications that occur due to blood clots
may be referred to as thrombotic events and, in rare cases, can be the
first obvious sign of polycythemia vera. Specific symptoms depend
upon where a blood clot forms. A blood clot can cause a stroke, chest
pain (angina), a heart attack, deep vein thrombosis (DVT) or a
pulmonary embolism. DVT occurs when a blood clot forms in the legs
Terms of Service & Privacy Policy
may cause the legs to become painful and swollen. A pulmonary
embolism
By continuing occurs
to use this whenyou
website, a clot forms
agree in Terms
to the the lungs or when
of Service a piece of a
& Privacy
Policy DVT breaks off and travels through the bloodstream, eventually I Agree
becoming stuck in the pulmonary artery. A pulmonary embolism can
cause breathlessness, sudden pain in the chest, exhaustion or life-
threatening complications such as high blood pressure of the
pulmonary artery.
Some individuals with polycythemia vera have developed Budd-Chiari
syndrome, a condition in which a blood clot forms in the main blood
vessel leading to the liver (hepatic vein thrombosis). Symptoms of
Budd-Chiari syndrome include pain in the upper right part of the
abdomen, an abnormally enlarged liver (hepatomegaly), yellowing of
 the skin and the whites of the eyes (jaundice) and/or accumulation of
fluid in the space (peritoneal cavity) between the two layers of the
membrane that line the stomach (ascites).
The abnormal proliferation of red blood cells may also cause peptic
ulcers, gout and kidney stones. Peptic ulcers are open sores on the
lining of the gastrointestinal tract, which may cause bleeding
(hemorrhaging) within the gastrointestinal tract. Gout is an
inflammation of the joints caused by a build-up of uric acid. Abnormally
high levels of uric acid can also cause kidney stones. Gout and kidney
stone associated with polycythemia vera occur due to the high
turnover of red blood cells, which results in higher-than-normal uric
acid production.
Polycythemia vera may eventually “burn out” so that scar tissue
replaces the marrow, and the disorder resembles idiopathic
myelofibrosis. This may also be referred to as the “spent phase” of
polycythemia vera. When this occurs, the marrow can no longer
produce blood cells resulting in low levels of healthy, functioning red
blood cells (anemia), platelets (thrombocytopenia) and white blood
cells (leukopenia). In rare cases, polycythemia vera may eventually
progress into a form of leukemia known as acute myeloid leukemia.

CAUSES
Polycythemia vera is caused by a malignant change in the genetic
material (DNA) within a single cell of the bone marrow (clonal disorder).
Bone marrow is the soft, spongy material found inside bone where
most
Terms of Service blood cell
& Privacy production occurs. The underlying reason why this
Policy
malignant change occurs is unknown.
By continuing to use this website, you agree to the Terms of Service & Privacy
Policy This change is acquired meaning that it occurs after conception and is I Agree
not inherited. Researchers have determined that approximately 90
percent of individuals with polycythemia vera have a variant in the
JAK2 gene. Genes provide instructions for creating proteins that play a
critical role in many functions of the body. When a variant in a gene
occurs, the protein product may be faulty, inefficient, absent or
overproduced. Depending upon the functions of the protein, this can
affect many organ systems of the body.
 The JAK2 gene produces a protein called a kinase, specifically Janus
kinase 2. Kinases are very powerful drivers of cell growth. In people
with polycythemia vera, the JAK2 gene is overactive because of the
underlying genetic change.
The original defective cell in the bone marrow of individuals with
polycythemia vera is a hematopoietic stem cell – a specialized cell that
grows and eventually develops into one of the three main types of
blood cells: red blood cells, white blood cells or platelets. A change in
the DNA of a single hematopoietic stem cell causes the abnormal cell
to continually reproduce itself, eventually becoming the predominant
hematopoietic stem cell in the bone marrow. Normally, the kidneys
produce a hormone called erythropoietin. This hormone binds to
receptors found on hematopoietic stem cells. Because the JAK2 gene
is overactive, these cells derived from the original defective
hematopoietic stem cell continue to grow and divide even in the
absence of erythropoietin. These rapidly growing cells clog the bone
marrow and when they break down and die, cause scar tissue to form.
Polycythemia vera and some similar disorders have, in rare cases,
affected multiple members of the same family suggesting that genetic
factors in addition to a JAK2 gene variant may play a role in the
development of the disorder. However, researchers have not
established a strong familial predisposition in association with
polycythemia vera.
The symptoms of polycythemia vera occur because of abnormalities
affecting the formation of blood cells that result in an overproduction
of red blood cells and, to a lesser extent, the overproduction of white
Terms of Service & Privacy Policy
blood cells and platelets.
By continuing to use this website, you agree to the Terms of Service & Privacy
Policy I Agree
AFFECTED POPULATIONS
Polycythemia vera affects slightly more males than females. The
disorder is estimated to affect approximately 44 to 57 per 100,000
people in the US. It occurs most often in individuals more than 60 years
old but can affect individuals of any age. It is extremely rare in
individuals under 20.
 DISORDERS WITH SIMILAR SYMPTOMS
Symptoms of the following disorders can be similar to those of
polycythemia vera. Comparisons may be useful for a differential
diagnosis.
Secondary polycythemia is a general term for the overproduction of
red blood cells that occurs because of (secondary to) a known cause.
Such causes include genetic disorders, certain tumors that may
secrete erythropoietin (a hormone that stimulates red blood cell
production) and conditions that deprive the body of oxygen such as
certain lung or heart diseases. Some people living in high altitudes may
develop secondary polycythemia in response to poor oxygenation of
tissue. Certain kidney disorders can result in the excessive production
of erythropoietin and, in turn, overproduction of red blood cells.
Therapy in individuals with secondary polycythemia involves treating
the underlying disorder or cause of polycythemia.
Primary myelofibrosis is a rare bone marrow disorder that is
characterized by abnormalities in blood cell production
(hematopoiesis) and scarring (formation of fibrous tissue) within the
bone marrow. Bone marrow is the soft, spongy tissue that fills the
center of most bones. Bone marrow contains specialized cells called
hematopoietic stem cells that grow and eventually develop into one of
the three main types of blood cells: red blood cells, white blood cells or
platelets. In primary myelofibrosis, a change in the DNA of a single
hematopoietic stem cell causes the abnormal cell to continually
reproduce itself. Eventually, these abnormal cells crowd out normal,
healthy cells in the marrow and, along with scarring within the marrow,
Terms of Service & Privacy Policy
disrupt the production of red and white blood cells and platelets. The
symptoms
By continuing associated
to use this withagree
website, you primary myelofibrosis
to the vary and
Terms of Service are related
& Privacy
Policy to the abnormalities affecting blood cell production. Affected I Agree
individuals may not have symptoms at the time of diagnosis
(asymptomatic) and may remain symptom-free for many years.
Eventually, affected individuals may develop fatigue, fever, frequent
infections, pale skin, night sweats and unexplained weight loss. An
enlarged (spleen) is a common finding. An enlarged liver
(hepatomegaly) may also occur. (For more information on this disorder,
choose “primary myelofibrosis” as your search term in the Rare Disease
Database.)
 Essential thrombocythemia (ET) is one of four rare MPNs.
Myeloproliferative means uncontrolled production of cells by the bone
marrow. Each of the four myeloproliferative neoplasms is characterized
by overproduction of a different, but essential, type of blood cell
resulting in a high concentration of these cells in the blood. Essential
thrombocythemia is characterized by overproduction of the precursor
cells to blood platelets (megakaryocytes) which, in turn, leads to a
vastly increased number of platelets in the blood. Platelets are
specialized cells in blood essential for the normal process of clotting. In
addition to over-production of platelets, other symptoms and signs of
ET may include an enlarged spleen (splenomegaly); bleeding from the
gut, gums and/or nose (hemorrhaging) and constricted or blocked
arteries (thrombosis). As many as two-thirds of patients are
asymptomatic upon initial examination. Most patients have symptoms
related to small or large vessel thrombosis or minor bleeding.
Presentation with a major bleeding episode is very unusual. Clots may
occur in the small arteries of the toes and fingers, leading to pain,
warmth, tissue death (gangrene) and/or classic erythromelalgia.
Erythromelalgia refers to a syndrome of redness and burning pain in
the extremities. The incidence of the thrombotic and bleeding episodes
is minimized, but not eliminated, with reduction of the platelet count to
normal. In some instances, this chronic disorder may be progressive,
evolving in relatively rare cases into acute leukemia or myelofibrosis.
(For more information on this disorder, choose “essential
thrombocythemia” as your search term in the Rare Disease Database.)
Chronic myelogenous leukemia is a rare myeloproliferative neoplasm
characterized by the excessive development of white blood cells in the
spongy
Terms of Service tissuePolicy
& Privacy found inside large bones of the body (bone marrow),
spleen,
By continuing liver
to use thisand blood.you
website, As agree
the disease progresses,
to the Terms the leukemic
of Service & Privacy cells
Policy invade other areas of the body including the intestinal tract, kidneys, I Agree
lungs, gonads and lymph nodes. There are two phases to chronic
myelogenous leukemia. The first phase, or chronic phase, is
characterized by a slow, progressive overproduction of white blood
cells. An advanced phase is called the acute phase or blast crisis. At
this point, over 50 percent of the cells in the bone marrow are
immature malignant cells (blast cells or promelocytes). In the acute
phase, the leukemia is very aggressive and does not respond well to
therapy. Approximately 85 percent of all individuals with chronic
myelogenous leukemia enter the acute phase.
 DIAGNOSIS
Diagnosis of polycythemia vera may be made based upon a thorough
clinical evaluation, detailed patient history and various specialized
tests. In many people, the disorder may be detected from blood tests
conducted during a routine examination. A complete blood count
(CBC) may demonstrate elevated numbers of red blood cells and
sometimes platelets and white blood cells.
Blood tests may also measure hemoglobulin and hematocrit.
Hemoglobin is the protein within red blood cells that carry oxygen.
Hematocrit is the percentage of red blood cells in the total blood
volume. If these measures are elevated it may indicate polycythemia
vera.
Physicians may also measure the levels of erythropoietin (EPO), a
hormone that causes the bone marrow to produce red blood cells. In
individuals with polycythemia vera, EPO levels are abnormally low. This
test is usually done to distinguish polycythemia vera from secondary
polycythemia, in which EPO levels are not affected.
In some patients, surgical removal and microscopic examination of
bone marrow tissue (biopsy) may also be used to diagnose
polycythemia vera. The sample tissue is tested to determine whether
the marrow is functioning properly.
A variety of specialized tests can be used to identify JAK2 gene
variants in blood cells, which is also diagnostic of polycythemia vera.

STANDARD THERAPIES
Terms of Service & Privacy Policy

By continuing to use this website, you agree to the Terms of Service & Privacy
Policy Treatment I Agree
The treatment of polycythemia vera is aimed at reducing the levels of
red blood cells and preventing the complications of the disorder
especially blood clot (thrombosis) formation. Treatment options
include phlebotomy and drug therapy.
Most individuals with polycythemia vera will have their blood drawn
(phlebotomy), usually at regular intervals over several months. This is
done to reduce the volume of circulating red blood cells so that blood
can flow and function properly. Phlebotomy may resolve symptoms
 associated with thickened blood and increased red blood cell
production. Phlebotomy may be the only treatment necessary for some
people, for many years. However, this procedure does not treat
elevated platelet levels (thrombocythemia), elevated white blood cell
levels (leukocytosis), itchy skin or gout. In some patients, phlebotomy
may contribute to elevated platelet levels.
Many individuals with polycythemia vera will also receive treatment
with certain drugs that suppress the formation of blood cells by the
marrow (myelosuppressive drugs). A chemotherapy drug known as
hydroxyurea is most often used. Another chemotherapy drug used is
busulfan. Other drugs such as chlorambucil and radioactive
phosphorous have been used in the past, but these drugs, especially in
individuals requiring long-term therapy, have been associated with
increased risk of developing leukemia.
Anagrelide is a drug used to lower the number of platelets and reduce
the risk of blood clot formation. Another drug, called interferon alfa,
stimulates the immune system to suppress blood cell production.
Additional therapies used for polycythemia vera include low-dose
aspirin to decrease the risk of blood clot formation, a drug called
allopurinol to treat high uric acid levels, and antihistamines or
ultraviolet light therapy to treat severe, persistent itchiness.
Individuals who enter the “spent phase” of polycythemia vera, in which
the bone marrow no longer produces healthy, functioning blood cells,
may require periodic blood transfusions to maintain sufficient levels of
blood cells. During the spent phase, the spleen may become
significantly
Terms of Service & Privacy enlarged
Policy and painful, potentially requiring its removal
through
By continuing to usesurgery (splenectomy).
this website, you agree to the Terms of Service & Privacy
Policy I Agree
Ruxolitinib (Jakafi) was approved by the U.S. Food and Drug
Administration (FDA) in 2011 for treatment of patients with
intermediate or high-risk myelofibrosis, including post-polycythemia
vera myelofibrosis. In 2014, Jakafi was approved for PV patients who
have had an inadequate response to or are intolerant of hydroxyurea.
This medication inhibits the JAK 1 and 2 enzymes that are involved in
regulating blood and immunological functioning.
 CLINICAL TRIALS AND STUDIES
Information on current clinical trials is posted on the Internet at
https://clinicaltrials.gov/. All studies receiving U.S. Government
funding, and some supported by private industry, are posted on this
government web site.
For information about clinical trials being conducted at the NIH Clinical
Center in Bethesda, MD, contact the NIH Patient Recruitment Office:
Toll-free: (800) 411-1222
TTY: (866) 411-1010
Email: prpl@cc.nih.gov
Some current clinical trials also are posted on the following page on
the NORD website:
https://rarediseases.org/living-with-a-rare-disease/find-clinical-trials/
For information about clinical trials sponsored by private sources,
contact:
https://www.centerwatch.com/
For information about clinical trials conducted in Europe, contact:
https://www.clinicaltrialsregister.eu/
Investigators are studying the anti-cancer drug imatinib mesylate
(Gleevec) in individuals with polycythemia vera. Gleevec has been
successfully in treating individuals with chronic myelogenous leukemia,
a related MPN. More research is necessary to determine the long-term
effectiveness and safety of this potential therapy for individuals with
polycythemia
Terms of Service vera.
& Privacy Policy

By continuing
Thetoidentification
use this website, youJAK2
of the agreevariants
to the Terms of to
has led Service & Privacy
new research
Policy initiatives for individuals with polycythemia vera and related disorders. I Agree
Medications that block or stop the activity of the protein product of
this gene (which may help stimulate abnormal blood cell growth) may
prove beneficial for affected individuals in the future.
Contact for additional information about polycythemia vera:
Ayalew Tefferi, MD
Professor of Medicine and Hematology
Department of Hematology
Mayo Clinic Transplant Center
 Mayo Clinic
Rochester, Minnesota
507-538-3270
tefferi.ayalew@mayo.edu

REFERENCES
TEXTBOOKS
Lichtman MA, Beutler E, Kipps TJ, Seligsohn U, et al. Eds. Williams
Hematology. 7th ed. McGraw-Hill Companies. New York, NY;
2006:779-803.
Algazy KM, Bergman GE. Polycythemia Vera. NORD Guide to Rare
Disorders. Lippincott Williams & Wilkins. Philadelphia, PA. 2003:411-412.
Berkow R., ed. The Merck Manual-Home Edition.2nd ed. Whitehouse
Station, NJ: Merck Research Laboratories; 2003:102-1027.
JOURNAL ARTICLES
Tefferi A, Barbui T. Polycythemia vera: 2024 update on diagnosis, risk-
stratification, and management. Am J Hematol. 2023;98(9):1465-1487.
doi:10.1002/ajh.27002
https://onlinelibrary.wiley.com/doi/epdf/10.1002/ajh.27002?
domain=p2p_domain&token=HDGQBZNMGJWDDBVISUGU
Tefferi A, Barbui T. Polycythemia vera and essential thrombocythemia:
2017 update on diagnosis, risk-stratification, and management. Am J
Hematol. 2017;92:94-108.
Barbui
Terms of Service T, Thiele
& Privacy J, Vannucchi AM, Tefferei A. Rationale for revision and
Policy
proposed changes of the WHO diagnostic criteria for polycythemia
By continuing
vera,toessential
use this website, you agree toand
thrombocythemia theprimary
Terms ofmyelofibrosis.
Service & Privacy
Blood
Policy Cancer J. 2015;5:e337. I Agree

Stein BL, Moliterno AR, Tiu RV. Polycythemia vera disease burden:
contributing factors, impact on quality of life, and emerging treatment
options. Ann Hematol. 2014;93:1965-1976.
Tefferi A. JAK2 mutations in polycythemia vera ? molecular
mechanisms and clinical applications. N Engl J Med. 2007;356:444-
445.
 Scott LM, Tong W, Levine RL, et al. JAK2 Exon 12 mutations in
polycythemia vera and essential thrombocythemia. N Engl J Med.
2007;356:459-468.
Finazzi G, Barbui T. How I treat patients with polycythemia vera. Blood.
2007;109:5104-5111.
Campbell PJ, Green AR. The myeloproliferative disorders. N Engl J Med.
2006;355:452-466.
Tefferi A. Classification, diagnosis and management of
myeloproliferative disorders in the JAK2V617F era. Hematology Am
Soc Hematol Educ Program.2006;240-5.
Campbell PJ, Green AR. Management of polycythemia vera and
essential thrombocythemia. Hematology Am Soc Hematol Educ
Program.2005;208-201.
Elliot MA, Tefferi A. Thrombosis and haemorrhage in polycythaemia
vera and essential thrombocythaemia. Br. J. Haematol.2005;128:275-
90.
Chomienne C, Rain JD, Briere JD, et al. Risk of leukemic transformation
in PV and ET patients. Pathol Biol (Paris). 2004;52:289-93.
Stuart BJ, Viera AJ. Polycythemia vera. Am Fam
Physician.2004;69:2139-44.
Spivak JL, Barosi G, Tognoni G, et al. Chronic myeloproliferative
disorders. Hematology (Am Soc Hematol Educ Program). 2003;200-
24.
Terms of Service & Privacy Policy

Kwaan
By continuing HC,this
to use Wang J. Hyperviscosity
website, in polycythemia
you agree to the vera
Terms of Service and other red
& Privacy
Policy cell abnormalities. Semin Thromb Hemost. 2003;29:451-58. I Agree
INTERNET
Nagalla S and Besa EC, Polycythemia Vera. Medscape. Updated: Aug
31, 2022. Available at:
https://www.emedicine.com/MED/topic1864.htm Accessed Nov 16,
2023.
Mayo Clinic for Medical Education and Research. Polycythemia Vera.
Feb. 11, 2022. Available at:
https://www.mayoclinic.com/health/polycythemia-vera/DS00919
 Accessed Nov 16, 2023.
Leukemia & Lymphoma Society. Polycythemia Vera Facts. Revised April
2015. Available at:
https://www.lls.org/sites/default/files/file_assets/FS13_PolycythemiaVera_FactSheet_fina
Accessed Nov 16, 2023.

Programs & Resources

RARECARE® ASSISTANCE PROGRAMS
NORD strives to open new assistance programs as funding allows. If
we don’t have a program for you now, please continue to check back
with us.
ADDITIONAL ASSISTANCE PROGRAMS

MedicAlert Assistance Program

NORD and MedicAlert Foundation have teamed up on a new

program to provide protection to rare disease patients in
emergency situations.
https://rarediseases.org/patient-assistance-programs/medicalert-
assistance-program/

Rare Disease Educational Support Program

Ensuring that patients and caregivers are armed with the tools
they need to live their best lives while managing their rare
condition is a vital part of NORD’s mission.
Terms of Service & Privacy Policy
https://rarediseases.org/patient-assistance-programs/rare-
By continuingdisease-educational-support/
to use this website, you agree to the Terms of Service & Privacy
Policy I Agree
Rare Caregiver Respite Program

This first-of-its-kind assistance program is designed for caregivers

of a child or adult diagnosed with a rare disorder.
https://rarediseases.org/patient-assistance-programs/caregiver-
respite/
 PATIENT ORGANIZATIONS

MPN Research Foundation

NORD Member
Email: communications@mpnrf.org
https://rarediseases.org/organizations/mpn-research-foundation/

CHAMP1 Research Foundation

NORD Member
Phone: 813-600-7950 Email: jeff@champ1foundation.org
https://rarediseases.org/organizations/champ1-research-
foundation/

CMT Research Foundation

NORD Member
Phone: 404-806-7180 Email: info@cmtrf.org
https://rarediseases.org/organizations/cmt-research-foundation/

Leukemia & Lymphoma Society

Phone: 914-949-5213 Email: infocenter@LLS.org
Fax: 914-949-6691
https://rarediseases.org/organizations/leukemia-lymphoma-
society/
Terms of Service & Privacy Policy

By continuing to use this website, you agree to the Terms of Service & Privacy
Policy NIH/National Heart, Lung and Blood Institute I Agree
Phone: 301-592-8573 Email: nhlbiinfo@rover.nhlbi.nih.gov
Fax: 301-251-1223
https://rarediseases.org/organizations/nih-national-heart-lung-
and-blood-institute/

National Cancer Institute

 Phone: 301-435-3848 Email: cancergovstaff@mail.nih.gov
https://rarediseases.org/organizations/national-cancer-institute/

Rare Cancer Alliance

https://rarediseases.org/organizations/rare-cancer-alliance/

MPN Education Foundation

Phone: 480-443-1975 Email: r.niblack@cox.net
Fax: 480-443-1154
https://rarediseases.org/organizations/mpn-education-
foundation/

NORD’s™ Rare Cancer Coalition™ (RCC)

https://rarediseases.org/organizations/nords-rare-cancer-
coalition-rcc/

Understanding Living with a Community Advancing Driving Get

Rare Disease Rare Disease Support Research Policy Involved

Terms of Service & Privacy Policy

By continuing to use this website, you agree to the Terms of Service & Privacy
Policy I Agree