Other Resources
If after further exploration of the Blood: The Vital Connection Web site you find that you are interested in learning more about blood diseases and disorders, here are a few other resources that may be of some help:
Articles From Hematology, the ASH Education Program Book
The American Society of Hematology (ASH) Education Book, updated yearly by experts in the field, is a collection of articles about the current treatment options available to patients. The articles are categorized here by disease type. If you are interested in learning more about a particular blood disease, we encourage you to share and discuss these articles with your doctor.
- Anemias - Aplastic anemia, sickle cell disease, thalassemia, vitamin B12 deficiency
- Bleeding Disorders -
Hemophilia, von Willebrand disease
- Bone Marrow and Hematopoietic Stem Cell Transplantation
- Disorders of Iron Metabolism -
Iron deficiency and overload, hemochromatosis
- Ethical Considerations in Hematology
- Hodgkin Lymphoma
- Infectious Diseases, Immunodeficiency Syndromes, and Autoimmune Diseases -
HIV/AIDS, malaria
- Leukemias (Acute) -
ALL, AML, APL
- Leukemias (Chronic) - CML, CLL, lymphoproliferative disorders
- Marrow Failure Syndromes - Inherited syndromes, aplastic anemia, myelodysplastic syndromes
- Miscellaneous Cellular Disorders
- Multiple Myeloma and Amyloidosis
- Myeloproliferative Disorders -
Polycythemia, essential thrombocytosis/thrombocythemia, myelofibrosis
- Neutropenia (Low White Blood Cell Count)
- Non-Hodgkin Lymphomas
- Pediatrics
- Platelet Disorders -
Idiopathic Thrombocytopenia Purpura (ITP), Thrombotic Thrombocytopenic Purpura (TTP), HELLP syndrome, Heparin-Induced Thrombocytopenia (HIT)
- Scientific Research
- Survivorship
- Thrombosis (Blood Clotting Disorders) -
Factor V Leiden, prothrombin gene mutations, protein C and S deficiency, antithrombin III deficiency, cardiolipin antibodies, lupus anticoagulants
- Transfusion Medicine
Other Resources
The following Web sites contain information about blood diseases and related disorders. This list of Web sites is provided as a service to the public by the American Society of Hematology (ASH), which does not endorse any of the linked sites and is not responsible for the content of external Web sites.
Amyloidosis
The Amyloidosis Foundation is committed to supporting patient education, advocacy programs, and research relating to amyloidosis. It is a recent merger between two organizations, the Amyloidosis Research Foundation and the Amyloidosis Support Network. A Web site for the new organization will be available soon; in the meantime, the foundation may be reached at 877-AMYLOID.
This organization is dedicated to supporting amyloidosis patients, care givers, and those who have lost someone to this disease.
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Anemia
Anemias and hemoglobinopathies, including sickle cell anemia and thalassemia
AA&MDSIF serves as a resource for patient assistance, advocacy, and support, and funds research to find treatments and a cure for aplastic anemia, myelodysplastic syndromes, and related bone marrow diseases. Please call 800.747.2820 to receive information in Spanish, French, Italian, German, and Russian.
CAF is dedicated to serving people afflicted with Cooley's anemia/thalassemia major by advancing the treatment and cure for this fatal blood disease, enhancing the quality of life of patients, and educating medical professionals, patients, and the public about thalassemia major.
The mission of the DMAF is to increase awareness and research of Diamond Blackfan Anemia with the hope that the research will enhance the understanding of this rare disorder and lead to a cure for patients around the globe.
The mission of the Fanconi Anemia Research Fund is to find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide.
The Society’s mission is to increase awareness about HELLP Syndrome, raise money for research, and provide support to affected families. Information is also available in Spanish.
This organization is dedicated to providing information and workshops about iron disorders, supporting positive relationships between patients and their physicians, and representing patients in Congress.
NAAC is dedicated to improving the lives of people with anemia. NAAC provides educational information and resources for patients and their families as well as caregivers, physicians, allied health-care professionals, researchers, and journalists.
Shwachman-Diamond Syndrome Canada is dedicated to raising and awarding funds for research into Shwachman-Diamond Syndrome (SDS), disseminating current medical information on the disease, and improving the quality of life for affected children and adults. Information is also available in French.
SCDAA’s mission is to promote finding a cure for sickle cell disease while improving the quality of life for individuals and families dealing with this disease.
The mission of TIF is to promote the appropriate treatment and a high quality of life for every patient with thalassaemia, to encourage prevention policies that aim to reduce the number of new affected births, and to encourage research leading to improved treatments and a cure for the disorder.
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Autoimmune and Inflammatory Diseases
The Association is dedicated to the eradication of autoimmune diseases and the alleviation of patients' suffering through fostering and facilitating collaboration in the areas of education, research, and patient services.
The APS Foundation of America is dedicated to fostering and facilitating joint efforts in the areas of education, support, research, patient services, and public awareness of Antiphospholipid Antibody Syndrome (APS). In addition to APS, the Web site provides detailed information on deep vein thrombosis, stroke, and other related disorders.
The Churg Strauss Syndrome Association is dedicated to supporting and educating patients and families affected by Churg Strauss Syndrome (CSS), raising public awareness about the syndrome, and stimulating research into its cause and cure.
The VF advocates for early diagnosis, leading edge treatments, and ultimately a cure for all types of vasculitis. VF was established to alleviate the isolation that patients and their families experience when these rare life-threatening diseases affect them.
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Bleeding Disorders
The Society's mission is to increase awareness about HELLP Syndrome, raise money for research, and provide support to affected families. Information is also available in Spanish.
The Hereditary Hemorrhagic Telangiectasia Foundation's mission is to aid and support patients with Hereditary Hemorrhagic Telangiectasia (HHT) and to provide them, their families, doctors, and the public with information about the disorder.
The mission of NHF is education, research, and advocacy on behalf of people with bleeding disorders.
WFH is an international organization dedicated to introducing, improving, and maintaining care for people with hemophilia and related bleeding disorders around the world. In addition to educational materials, the Web site provides a message board, advocacy tools, and a directory of worldwide hemophilia treatment centers. Information is also available in French and Spanish.
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Blood Clotting Disorders
A guide to preventing and treating blood clots from the Agency for Healthcare Research and Quality (AHRQ).
The APS Foundation of America is dedicated to fostering and facilitating joint efforts in the areas of education, support, research, patient services, and public awareness of Antiphospholipid Antibody Syndrome (APS). In addition to APS, the Web site provides detailed information on deep vein thrombosis, stroke, and other related disorders.
The Society’s mission is to increase awareness about HELLP Syndrome, raise money for research, and provide support to affected families. Information is also available in Spanish.
NATT is a nationwide health organization committed to preventing and treating the array of major health problems caused by blood clots. The organization’s goal is to ensure that people suffering from thrombosis and thrombophilia receive early diagnosis, optimal treatment, and quality support by fostering research, education, support, and advocacy on behalf of those at risk of, or affected by, blood clots.
The mission of the PHA is to seek a cure for pulmonary hypertension and provide hope for the pulmonary hypertension community through support, education, advocacy, and awareness. The Web site provides educational materials (also available in Spanish), contact information for support groups, a “Find a Doctor” feature, details about medical insurance coverage, advocacy information, and a host of other resources.
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Blood Donation
The American Red Cross is dedicated to saving lives and helping people prevent, prepare for, and respond to emergencies. The Red Cross is the largest supplier of blood and blood products to more than 3,000 hospitals across the nation and also assists victims of international disasters and conflicts at locations worldwide. This Web site provides information on blood donation, blood safety, and volunteer opportunities, and includes AIDS/HIV resources and news updates. This site also provides information in Spanish.
The AABB is an international association of blood banks, including hospital and community blood centers, transfusion and transplantation services, and individuals involved in activities related to transfusion and transplantation medicine. The organization is dedicated to encouraging the voluntary donation of blood and other tissues and organs through education, public information, and research. This Web site provides news updates; detailed information about blood, blood banking, and blood diseases; a search function for locations to donate or receive blood; information on professional development opportunities; and an archive of AABB newsletters.
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Blood Tests
Lab Tests Online is the product of collaboration between several professional societies representing the lab community, including ASH. Lab Tests Online is an online resource for physicians and patients to help in the understanding of clinical lab tests that are part of routine care as well as diagnosis and treatment of a broad range of conditions and diseases.
The National Library of Medicine, the world's largest medical library, provides MedlinePlus, an online a resource of complete and up-to-date health information for both medical professionals and the general public. The Laboratory Tests page provides a variety of information on common blood tests, as well as tests for specific conditions.
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Bone Marrow and Stem Cell Transplantation
The National Marrow Donor Program facilitates blood stem cell transplants for patients who do not have a donor in their family, and manages the world's largest registry of volunteer stem cell donors and cord blood units. NMDP works to increase access to transplantation through research, advocacy, and public and professional education. This Web site provides information about bone marrow and blood product donations; inspiring real life stories; resources and topics of interest to patients afflicted with a disease that can be treated by a transplant; in-depth information for medical professionals; a news and events section; and a directory of U.S. and international transplant and donor centers. This site also provides information in Spanish, Korean, Tagalog, Chinese, and Vietnamese.
The International Bone Marrow Transplant Registry, collecting patient data on allogeneic blood and marrow transplants worldwide, and the Autologous Blood and Marrow Transplant Registry, collecting patient data on autologous blood and marrow transplants performed in North and South America , both strive, through their research, to improve the results of blood and bone marrow transplants. This Web site provides a directory of transplant centers, issues of the IBMTR/ABMTR newsletter, meeting information, a basic introduction to blood and marrow transplantation, and a listing of related publications and Web sites.
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Cancer
Cancer.Net, the patient information Web site of the American Society of Clinical Oncology, provides information on more than 50 types of cancer, related treatments and their side effects, a section for patients and their families on coping with cancer, and clinical trial information. Additional resources include a Find an Oncologist feature, a gallery of medical illustrations, message boards, and a drug database.
CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization. The organization is committed to conquering childhood cancer through scientific discovery and compassionate care. Information is also available in Spanish.
NCI is the federal government's principal agency for cancer research and training and is an important organization for health information dissemination and other programs with respect to cancer and the care of cancer patients and their families. This Web site provides a wide variety of information for patients and health professionals on the prevention, causes, and treatment of all types of cancer. Other features include a dictionary of related terms, a listing of funding opportunities for researchers, a calendar of cancer-related scientific meetings and events, a search tool for clinical trials, an index of cancer statistics, and postings of major news releases. This site also provides information in Spanish.
The National Comprehensive Cancer Network, an alliance of 19 of the world's leading cancer centers, is a source of information to help patients and health professionals make informed decisions about cancer care. NCCN's complete spectrum of programs emphasizes improving the quality, effectiveness, and efficiency of oncology practice. This Web site provides clinical practice guidelines in oncology, treatment guidelines for patients (also available in Spanish), a clinical trials network, details on educational conferences and symposia for clinicians, and a physician directory.
Links that may be of particular interest include:
NCCS advocates for quality cancer care on behalf of individuals with all types of cancer. The Web site provides an introduction to advocacy and the rights of cancer patients, in addition to educational material. Information is also available in Spanish.
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Clinical Trials
This Web site provides updated information about federally and privately supported clinical research in human volunteers. ClinicalTrials.gov furnishes information about a trial's purpose, who may participate, locations, and contact information for more details.
This Web site provides a search engine by which you can locate U.S. clinical trials by type of cancer. The site also provides educational materials for patients, includes recent developments in clinical trials, and furnishes guidelines and information for researchers on conducting clinical trials. This information is also available in Spanish.
CenterWatch is dedicated to providing patients and their advocates with a variety of information services about clinical research. This Web site provides an extensive list of clinical trials being conducted internationally, includes a link to search for information on a specific drug, lists promising therapies newly approved by the Food and Drug Administration, supplies an online patient bookstore, furnishes a listing of health associations, and provides a general introduction for patients on clinical research.
CALGB is a national clinical research group, sponsored by the National Cancer Institute, dedicated to bringing together clinical oncologists and laboratory investigators to develop better treatments for cancer. CALGB research is focused on seven major disease areas: leukemia, lymphoma, breast cancer, lung cancer, gastrointestinal malignancies, genito-urinary malignancies, and melanoma. This Web site provides general clinical trial information, links for finding clinical trials, listings of meetings, and cancer research updates.
ECOG is one of the largest clinical cancer research organizations in the United States and conducts clinical trials on all types of adult cancers. This Web site provides introductory information on clinical trials, supplies a publications search engine, furnishes a directory of ECOG institutions, and includes a medical glossary.
The Southwest Oncology Group is an adult cancer clinical trials organization, one of the largest in the world. The Web site provides a search function for clinical trials by drug or type of cancer, an archive of the organization's newsletter, and meeting and training information.
COG's mission is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. This Web site provides a search function for clinical trials, educational and support resources for children and their families coping with cancer, long-term follow-up guidelines for cancer survivors, and a directory for finding local, national, and international cancer organizations.
The NCCTG is a clinical research group, sponsored by the National Cancer Institute, which specializes in researching methods of treating and preventing cancer, and in researching methods to alleviate the side effects of cancer and cancer treatments. NCCTG consists of a network of cancer specialists at community clinics, hospitals, and medical centers in the United States, Canada, and Mexico. This Web site provides general information about clinical trials, furnishes clinical trials listings, contains NCCTG news releases, and includes information on patient advocacy.
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Genetic and Metabolic Disorders
APF is dedicated to improving the health and well-being of individuals and families affected by porphyria. The organization’s goals are to enhance public awareness about porphyria, develop educational programs, distribute educational materials, and support porphyria research.
The Barth Syndrome Foundation’s mission is to guide the search for a cure for Barth Syndrome, to educate and support physicians, and to create a caring community for affected families. Information is also available in Spanish, French, German, Italian, Dutch, and Portuguese.
The Human Genome Project is an international effort, formally begun in 1990, to determine the complete sequence of the 3 billion DNA subunits, identify all human genes, and make them accessible for further biological study. Some 18 countries have participated in the HGP. The Department of Energy's Human Genome Program and the National Institutes of Health's National Human Genome Research Institute together make up the U.S. Human Genome Project. This Web site provides various Internet tools that can be used to investigate genetic disorders, chromosomes, genome maps, genes, sequence data, genetic variants, and molecular structures.
Links that may be of particular interest include:
The JGDC was created as a means by which a number of smaller, individual organizations could join together to heighten awareness of Jewish genetic diseases. The consortium pulls together resources and experience to educate medical professionals, rabbis, and the Ashkenazi Jewish population at large about the existence of carrier screening.
Gaucher Disease (pronounced go-shay) is a lysosomal disorder which largely affects the Ashkenazi Jewish population of eastern and central European descent, but can affect anyone. The NGF supports and promotes research on Gaucher Disease, provides financial assistance and resources for patients, and promotes community and physician awareness of the disease. In addition to educational materials, the Web site provides the ability to join an e-mail discussion group of patients and health-care professionals.
NORD is a federation of voluntary health organizations dedicated to helping people with rare diseases. The Web site provides educational materials for patients and physicians and an index of organizations that assist people with rare disorders.
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Histiocytoses
The Histiocytosis Association of America’s goals are to promote scientific research on histiocytoses, offer support to patients and their families, and provide education on the disease.
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Leukemia
The mission of this society is to help reduce suffering and improve care and the quality of life of CML patients. It provides support, advocacy, education, and information on CML, treatments, and research initiatives. Information is also available in French.
The Leukaemia Foundation is an Australian-based organization that supports cancer research and offers assistance to patients and families. Information is also available in Arabic, Chinese, Croatian, Filipino, Greek, Italian, Korean, Macedonian, and Vietnamese.
The Leukemia and Lymphoma Society's mission is to cure leukemia, lymphoma, Hodgkin lymphoma, and myeloma, and to improve the quality of life of patients and their families. In addition to educational materials, the Web site also furnishes live discussion boards on related topics. Information is also available in French, Portuguese, and Spanish.
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Lymphoma
The International Waldenström Macroglobulinemia Foundation’s objectives include providing support and education for patients, caregivers, and their families dealing with Waldenström Macroglobulinemia, and promoting and funding research leading to improved treatment and a cure for this rare blood cancer. Information is also available in French and Spanish.
The Leukemia and Lymphoma Society's mission is to cure leukemia, lymphoma, Hodgkin lymphoma, and myeloma, and to improve the quality of life of patients and their families. Information is also available in French, Portuguese, and Spanish.
The Lymphatic Research Foundation is dedicated to promoting and supporting research leading to therapeutic advances and a cure for lymphatic disease, lymphedema, and related disorders.
The Lymphoma Coalition is dedicated to raising the awareness of lymphoma with the general public, patients, and their families, and with physicians and other health-care professionals involved in the treatment of lymphoma. Information is also available in French, German, Italian, and Spanish.
The goal of Lymphoma Foundation Canada is to focus on lymphoma research, education, and awareness in Canada and to provide support to individuals with this cancer.
LRF's mission is to eradicate lymphoma and serve those touched by the disease. Lymphoma fact sheets are also available in Chinese and Spanish.
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Multiple Myeloma and Waldenström Macroglobulinemia
EMP provides patients and their families with educational materials and support and is dedicated to improving the treatment of multiple myeloma through research, advocacy, and awareness.
IMF is dedicated to finding effective treatments and a cure for multiple myeloma, as well as providing education, support, and advocacy for those affected by the disorder. Information is also available in Chinese, French, German, Greek, Hebrew, Italian, Japanese, Korean, Polish, Portuguese, Russian, Spanish, and Turkish.
The International Waldenström Macroglobulinemia Foundation’s objectives include providing support and education for patients, caregivers, and their families dealing with Waldenström Macroglobulinemia, and promoting and funding research leading to improved treatment and a cure for this rare blood cancer. Information is also available in French and Spanish.
The MMRF is the largest nonprofit foundation dedicated to the single mission of accelerating the search for a cure for multiple myeloma.
Myeloma UK provides information and support to those affected by myeloma and aims to improve treatment and care through education, research, advocacy, and awareness. In addition to providing educational materials, an e-mail service is available to patients to receive advice from nurses who specialize in the disorder.
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Myelodysplastic Syndromes (MDS)
The Foundation serves as a resource for patient assistance, advocacy, and support, in addition to funding research to find treatments and a cure for aplastic anemia, myelodysplastic syndromes, and related bone marrow diseases. Please call 800.747.2820 to receive information in Spanish, French, Italian, German, and Russian.
The MDS Foundation is devoted to the prevention, treatment, and study of myelodysplastic syndromes. In addition to educational materials, the Web site provides details on nationwide patient symposia and a listing of treatment centers in the U.S. and abroad.
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Myeloproliferative Disorders (MPD)
Polycythemia vera, essential thrombocytosis, and myelofibrosis
The MPD Foundation's primary mission is to raise public awareness of myeloproliferative disorders (MPD) and to stimulate original research in pursuit of new treatments and, eventually, a cure.
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National Organizations
NHLBI provides leadership for a national program in diseases of the heart, blood vessels, lungs, and blood; blood resources; and sleep disorders. The Institute supports and conducts research in these areas, supports training and career development of researchers, and conducts educational activities, including development and dissemination of materials, on these topics. The NHLBI Web site contains a variety of health information and publications for patients and health professionals, provides resources for researchers, includes clinical trial information, and offers a news and events center.
Links that may be of particular interest include:
NCI is the federal government's principal agency for cancer research and training and is an important organization for health information dissemination and other programs with respect to cancer and the care of cancer patients and their families. This Web site provides a wide variety of information for patients and health professionals on the prevention, causes, and treatment of all types of cancer. Other features include a dictionary of related terms, a listing of funding opportunities for researchers, a calendar of cancer-related scientific meetings and events, a search tool for clinical trials, an index of cancer statistics, and postings of major news releases. This site also provides information in Spanish.
This Web site provides detailed information about inherited bone marrow failure syndromes (IBMFS), diseases of the blood and bone marrow that are also associated with a high risk of cancer. The site primarily provides information about a study sponsored by the National Cancer Institute on IBMFS, but also provides detailed descriptions of these disorders, information on gene mutation, a list of useful links, and a glossary of related terms.
NIDDK conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines. This Web site provides a news archive; event, conference, and workshop details; research resources and clinical trial information; training, career development, and funding opportunities for researchers; reports to Congress and testimony; health information for patients; and links to National Education Programs.
The National Comprehensive Cancer Network, an alliance of 19 of the world's leading cancer centers, is a source of information to help patients and health professionals make informed decisions about cancer care. NCCN's complete spectrum of programs emphasizes improving the quality, effectiveness, and efficiency of oncology practice. This Web site provides clinical practice guidelines in oncology, treatment guidelines for patients (also available in Spanish), a clinical trials network, details on educational conferences and symposia for clinicians, and a physician directory.
Links that may be of particular interest include:
The National Library of Medicine, the world's largest medical library, provides MedlinePlus, an online a resource of complete and up-to-date health information for medical professionals and the general public. MedlinePlus collects this information from the National Institutes of Health and other sources on over 650 diseases and conditions. This Web site provides directories of hospitals and physicians, a medical dictionary and encyclopedia, extensive drug information, current health news, links to clinical trials, and educational materials, including interactive tutorials for patients on a variety of topics. Information is also provided in Spanish.
Links that may be of particular interest include:
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Pediatric Issues
CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization. The organization is committed to conquering childhood cancer through scientific discovery and compassionate care. Information is also available in Spanish.
Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare and life-threatening diseases. The organization also participates in fundraising activities to help reduce the laboratory-to-bedside time for emerging therapies for children with rare tumors. The Web site provides parents with a database of information on many diseases and advice to help parents communicate more effectively with hospitals and doctors.
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