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The following third-party Web sites contain information about blood diseases and related disorders. The American Society of Hematology (ASH™) provides this list of Web sites as a service to the public. ASH does not endorse any of the linked sites and is not responsible for the content of external Web sites.
View patient groups by topic:
Amyloidosis
Amyloidosis Foundation
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.
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 Spanish, French, Italian, German, and Russian.
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 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.
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.
HELLP Syndrome Society, Inc.
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.
Iron Disorders Institute
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.
National Anemia Action Council
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
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.
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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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.
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 Web site provides detailed information on deep vein thrombosis, stroke, and other related disorders.
Churg Strauss Syndrome Association
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.
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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Bleeding Disorders
HELLP Syndrome Society, Inc.
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.
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 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
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 Web site provides detailed information on deep vein thrombosis, stroke, and other related disorders.
HELLP Syndrome Society, Inc.
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.
National Alliance for Thrombosis and Thrombophilia
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.
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 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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Cancer Survivorship
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 Coalition for Cancer Survivorship
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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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. Information is also available in Spanish, French, German, Italian, Dutch, and Portugese.
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 Web site 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 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
Histiocytosis Association of America
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
CML Society of Canada
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.
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 Web site also furnishes live discussion boards on related topics. Information is also available in French, Portugese, and Spanish.
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Lymphoma
International Waldenström’s Macroglobulinemia Foundation
The International Waldenström's Macroglobulinemia Foundation’s objectives include providing support and education for patients, caregivers, and their families dealing with Waldenström’s 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.
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 French, Portugese, and Spanish.
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. Information is also available in French, German, Italian, and Spanish.
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’s Macroglobulinemia
European Myeloma Platform
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. Information is also available in German.
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, Portugese, Russian, Spanish, and Turkish.
International Waldenström’s Macroglobulinemia Foundation
The International Waldenström's Macroglobulinemia Foundation’s objectives include providing support and education for patients, caregivers, and their families dealing with Waldenström’s 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.
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 Spanish, French, Italian, German, and Russian.
Myelodysplastic Syndromes Foundation
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
MPD Foundation
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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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 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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