American Society of Hematology

Patient Groups

The following websites contain information about blood diseases and related disorders. This list of websites 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 websites.

Amyloidosis

Amyloidosis Foundation  

The Amyloidosis Foundation is committed to supporting patient education, advocacy programs, and research relating to amyloidosis. It is a merger between two organizations, the Amyloidosis Research Foundation and the Amyloidosis Support Network.

Amyloidosis Support Groups  

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  

Aplastic Anemia and MDS International Foundation  

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 English,Spanish and French.

Cooley's Anemia Foundation  

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.

Daniella Maria Arturi Foundation  

The Daniella Maria Arturi Foundation's mission is to stimulate and support advanced clinical and laboratory research and clinical care initiatives in Diamond Blackfan Anemia (DBA), while increasing DBA awareness among the scientific, medical, lay and government communities. DBA is the first disease known to be associated with a defect in ribosome biosynthesis and is characterized by red cell aplasia, birth defects and a predisposition to cancer.

Diamond Blackfan Anemia Foundation  

The mission of the Diamond Blackfan Anemia Foundation is to collectively and actively generate funds for the charitable and scientific purpose of furthering, by clinical study, laboratory research, publication and teaching, the knowledge of the disorder known as Diamond Blackfan Anemia (DBA), and to share this knowledge, to inform, to lend support, and to communicate with all families of DBA patients.

Fanconi Anemia Research Fund  

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.

Sickle Cell Disease Association of America  

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.

Thalassaemia International Federation  

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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Bleeding Disorders

Hereditary Hemorrhagic Telangiectasia Foundation  

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.

National Hemophilia Foundation  

The mission of NHF is education, research, and advocacy on behalf of people with bleeding disorders.

World Federation of Hemophilia  

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 website 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

Agency for Healthcare Research and Quality  

The Agency for Healthcare Research and Quality's (AHRQ) mission is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans.

Links that may be of particular interest include information about:

APS Foundation of America  

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 site provides detailed information on deep-vein thrombosis, stroke, and other related disorders.

National Blood Clot Alliance  

Formerly known as NATT, the National Blood Clot Alliance 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.

Preeclampsia Foundation  

The Preeclampsia Foundation's mission is to reduce maternal and infant illness and death due to preeclampsia and other hypertensive disorders of pregnancy by providing patient support and education, raising public awareness, catalyzing research and improving health care practices.

Pulmonary Hypertension Association  

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 website 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.

Vascular Disease Foundation  

The mission of the Vascular Disease Foundation is to improve health for all by reducing death and disability from vascular disease.

Venous Disease Coalition  

The Venous Disease Coalition is a collaborative network of professional and public organizations united by one mission to increase public and health professional awareness of venous disease.

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Blood Donation

AABB  

Established in 1947, AABB (formerly known as the American Association of Blood Banks) is an international, not-for-profit association dedicated to the advancement of science and the practice of transfusion medicine and related biological therapies. The association is committed to improving health by developing and delivering standards, accreditation and educational programs and services to optimize patient and donor care and safety. AABB membership consists of approximately 1,800 institutions and 8,000 individuals, including physicians, scientists, administrators, medical technologists, nurses, researchers, blood donor recruiters, and public relations personnel. Members are located in all 50 states and 80 countries.

Americas Blood Centers  

Founded in 1962, America's Blood Centers (ABC) is North America's largest network of nonprofit, community blood centers. ABC's U.S. members provide 50 percent of the U.S. blood supply and are licensed and regulated by the U.S. Food and Drug Administration; Canadian members provide 100 percent of the Canadian blood supply and are regulated by Health Canada. ABC members serve more than 180 million people at 600-plus collection sites, and provide blood products and services to more than 4,200 hospitals and health care facilities across North America.

American Red Cross  

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 website 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.

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Blood Tests

Lab Tests Online  

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.

Medline Plus: Laboratory Tests  

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

National Marrow Donor Program  

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 website 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 SpanishKoreanChinese, andVietnamese.

The Center for International Blood and Marrow Transplant Research  

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 website 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 websites.

International Society for Stem Cell Research  

The mission of ISSCR is to foster the exchange and dissemination of information and ideas relating to stem cells, to encourage the general field of research involving stem cells, and to promote professional and public education in all areas of stem cell research and application. This website provides a patient handbook, stem cell briefings, a Junior Investigators' Tool Box, literature highlights from their newsletter The Pulse, and a Closer Look website that offers tools to assist patients as they consider a clinic or treatment.

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Cancer

Cancer.Net

Cancer.Net, the patient information website 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  

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.

National Cancer Institute  

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 website 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.

National Comprehensive Cancer Network  

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 website provides clinical practice guidelines in oncology, treatment guidelines for patients, a clinical trials network, details on educational conferences and symposia for clinicians, and a physician directory.

Links that may be of particular interest include:

 

National Coalition for Cancer Survivorship   

NCCS advocates for quality cancer care on behalf of individuals with all types of cancer. The website provides an introduction to advocacy and the rights of cancer patients, in addition to educational material.

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Clinical Trials

American Society of Hematology (ASH) Guide to Clinical Trials  

This page of the ASH website answers frequently asked questions about what clinical trials are and how to participate in them.

ClinicalTrials.gov  

This website 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.

Cancer.gov: Clinical Trials  

This website 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 Clinical Trials Listing Service  

CenterWatch is dedicated to providing patients and their advocates with a variety of information services about clinical research. This website 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.

Cancer and Leukemia Group B  

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 website provides general clinical trial information, links for finding clinical trials, listings of meetings, and cancer research updates.

Eastern Cooperative Oncology Group   

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 website provides introductory information on clinical trials, supplies a publications search engine, furnishes a directory of ECOG institutions, and includes a medical glossary.

Southwest Oncology Group  

The Southwest Oncology Group is an adult cancer clinical trials organization, one of the largest in the world. The website 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.

Children's Oncology Group  

COG's mission is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. This website 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.

North Central Cancer Treatment Group  

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 website 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

American Porphyria Foundation  

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.

Barth Syndrome Foundation  

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.

Human Genome Project   

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 website 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:

Jewish Genetic Disease Consortium  

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.

National Gaucher Foundation  

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 website provides the ability to join an e-mail discussion group of patients and health-care professionals.

National Organization for Rare Disorders  

NORD is a federation of voluntary health organizations dedicated to helping people with rare diseases. The website provides educational materials for patients and physicians and an index of organizations that assist people with rare disorders.

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Histiocytoses

Histiocytosis Association  

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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Immune Deficiency, Autoimmune, and Inflammatory Diseases

American Autoimmune Related Diseases Association  

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.

American Partnership for Eosinophilic Disorders  

American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.

APS Foundation of America  

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 website provides detailed information on deep vein thrombosis, stroke, and other related disorders.

Immune Deficiency Foundation  

The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

Vasculitis Foundation  

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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Leukemia

Leukaemia Foundation  

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.

Leukemia and Lymphoma Society  

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 website also furnishes live discussion boards on related topics. Information is also available in Frenchand Spanish.

National CML Society
The National CML Society's mission is to bring patients and their families hope through educational resources, access to CML Specialists, and a living breathing network of others that can share their personal CML experiences and successes.

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Lymphoma

International Waldenström Macroglobulinemia Foundation  

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.

Leukemia and Lymphoma Society  

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 FrenchandSpanish.

Lymphatic Research Foundation  

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.

Lymphoma Coalition  

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.

Lymphoma Foundation Canada  

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.

Lymphoma Research Foundation  

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

Myeloma Patients Europe  

MPE 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. It was formed following the merger of the European Myeloma Platform and Myeloma Euronet.

International Myeloma Foundation  

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.

International Waldenström Macroglobulinemia Foundation  

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.

Multiple Myeloma Research Foundation  

The MMRF is the largest nonprofit foundation dedicated to the single mission of accelerating the search for a cure for multiple myeloma.

Myeloma UK  

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)

Aplastic Anemia and MDS International Foundation  

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 English, Spanish, and French.

Myelodysplastic Syndromes Foundation  

The MDS Foundation is devoted to the prevention, treatment, and study of myelodysplastic syndromes. In addition to educational materials, the website provides details on nationwide patient symposia and a listing of treatment centers in the United States and abroad.

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Myeloproliferative Neoplasms (MPN)

Polycythemia vera, essential thrombocytosis, and myelofibrosis  

MPN Research Foundation  

The MPN Research Foundation's primary mission is to raise public awareness of myeloproliferative neoplasms (MPN) and to stimulate original research in pursuit of new treatments and, eventually, a cure.

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National Organizations

National Heart, Lung, and Blood Institute  

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 website 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:

National Cancer Institute  

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 website 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.

NCI: Inherited Bone Marrow Failure Syndromes  

This website 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.

National Institute of Diabetes and Digestive and Kidney Diseases  

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 website 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.

National Comprehensive Cancer Network  

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 website provides clinical practice guidelines in oncology, treatment guidelines for patients, a clinical trials network, details on educational conferences and symposia for clinicians, and a physician directory.

Links that may be of particular interest include:

Medline Plus  

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 website 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  

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  

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 website 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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