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.
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.
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.
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.
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.
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.
Foundation for Women and Girls with Blood Disorders
The Foundation for Women & Girls with Blood Disorders seeks to ensure that all women and adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage. The Foundation works to achieve this goal through raising awareness and educating key healthcare providers for each particular life stage, and translating and disseminating provider information and research.
Hemophilia Federation of America
Hemophilia Federation of America, Inc. (HFA) is a patient education, services and advocacy organization serving the rare bleeding disorders community. HFA is exclusively focused on the bleeding disorders patient and caregiver community.
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.
Platelet Disorder Support Association
The Platelet Disorder Support Association's mission is to provide information, offer support, and encourage research about ITP and other platelet disorders. PDSA is devoted to offering the most timely, accurate, and comprehensive information for medical professionals and patients with ITP and other platelet 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.
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:
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.
CLOT PLUS (Premium LiteratUre Service) is supported by the Canadian Venous Thromboembolism Research Network (CanVECTOR) Network and powered by the Health Information Research Unit, McMaster University, building on the McMaster Premium Literature Service, McMasterPLUSTM. CLOT+ is a continuously updated repository of current best evidence from research to support evidence-based clinical decisions.
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.
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.
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.
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.
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.
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.
Blood & Marrow Transplant Information Network
Blood & Marrow Transplant Information Network (BMT InfoNet) is not-for-profit 501(c)3 organization dedicated to providing transplant patients, survivors and their loved ones with emotional support and high quality, easy-to-understand information about bone marrow, peripheral blood stem cell and cord blood transplants.
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.
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 Spanish, Korean, Chinese, and Vietnamese.
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.
Professional oncology social workers at CancerCare work to provide free emotional and practical support for people with cancer, caregivers, loved ones and the bereaved through online support groups, counseling, educational sessions, and financial assistance.
Coping with Cancer: Supportive and Palliative Care
A survivorship site sponsored by the National Cancer Institute (NCI) with pamphlets on topics such as life after cancer, follow-up medical care, physical changes that one may experience after completing cancer treatment, and common family problems that often occur after treatment.
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.
Help for Cancer Caregivers is a unique collaboration of organizations with a shared goal of improving the health and well-being of the people who care for people with cancer.
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.
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.
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.
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.
Alliance for Clinical Trials in Oncology
The Alliance for Clinical Trials in Oncology develops and conducts clinical trials with promising new cancer therapies, develops optimal treatment and prevention strategies for cancer, and researches methods to alleviate side effects of cancer and cancer treatments. Collectively, the Alliance comprises nearly 10,000 cancer specialists at hospitals, medical centers, and community clinics across the U.S. and Canada. The website provides a search function for active clinical trials, offers summaries of results of its studies in an easy-to-read format, and lists a variety of resources available for patients, caregivers, physicians, investigators, and others touched by cancer.
ECOG-ACRIN Cancer Research Group
The Eastern Cooperative Oncology Group- American College of Radiology Imaging Network (ECOG-ACRIN) Cancer Research Group is a membership-based scientific organization that designs and conducts biomarker-driven cancer research involving adults who have or are at risk of developing cancer. The website provides information on myths and facts about cancer clinical trials, resources for patients, a list of active clinical trials currently recruiting participants, educational materials for active trials, and a directory of ECOG-ACRIN institutions.
NRG Oncology is a non-profit research organization formed to conduct oncologic clinical research and to broadly disseminate study results for informing clinical decision making and healthcare policy. NRG Oncology brings together the National Surgical Adjuvant Breast and Bowel Project, the Radiation Therapy Oncology Group, and the Gynecologic Oncology Group. The website provides a search function for active clinical trials, a publication search, and links to resources of interest to affiliated investigators, site research teams, and patients and their families.
Southwest Oncology Group (SWOG) is a worldwide network of researchers that design and conduct cancer clinical trials. There are nearly 6,000 physician researchers in the network practicing at more than 950 institutions across seven countries. The website provides a search function for open, closed, and published clinical trials, a glossary of cancer terms, and links to useful resources.
The mission of the Children's Oncology Group (COG) 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.
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.
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.
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.
The Histiocytosis Association's goals are to promote scientific research on histiocytoses, offer support to patients and their families, and provide education on the disease.
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.
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.
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.
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.
The CLL Society Inc. is a patient–centric, physician–curated nonprofit organization focused on patient education, support and research. Dedicated to addressing the unmet needs of the CLL and related blood cancer communities, we explain the rapidly changing therapeutic landscape and the importance of clinical trials, supports and build patient networks, engage in research and educate providers and patients alike.
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 website also furnishes live discussion boards on related topics. Information is also available in French and Spanish.
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.
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.
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.
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.
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 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.
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.
Polycythemia vera, essential thrombocytosis, and myelofibrosis
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.
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:
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 Center for Complementary and Integrative Health
The National Center for Complementary and Integrative Health (NCCIH) is the Federal Government's lead agency for scientific research on complementary and integrative health approaches. The mission of NCCIH is to define, through rigorous scientific investigation, the usefulness and safety of complementary and integrative health interventions and their roles in improving health and health care.
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:
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:
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.