Blood Disorders

Resources in this category:

Aplastic Anemia Foundation of America, Inc.
http://www.aamds.org/aplastic/

The Aplastic Anemia Foundation of America is dedicated to "fighting Aplastic Anemia, Myelodysplastic Syndromes, and other bone marrow failure". This site contains international conference information and educational publications on Aplastic Anemia, Myelodysplastic Syndromes, and other bone marrow failure diseases.

Caitlin Raymond International Registry
http://www.crir.org/

The Caitlin Raymond International Registry is "the search coordinating center for the American Bone Marrow Donor Registry and the American Cord Blood Program." It is "a comprehensive resource for patients and physicians conducting a search for unrelated bone marrow or cord blood donor. The Registry accesses more than 1.8 million donors internationally (not including the donor panel of the National Marrow Donor Program)."

HHT Foundation International, Inc
http://www.hht.org/

A non-profit organization dedicated to the support of persons with HHT (Hereditary Hemorrhagic Telangiectasia), a rare genetic disorder that affects blood vessels. This website contains a description of symptoms and treatments of HHT, a list of diseases HHT can masquerade as, a database of HHT information, information on conferences and seminars and links to related sites.

International Bone Marrow Transplant Registry
http://www.ibmtr.org/

"The IBMTR is an international study group engaged in ongoing investigation of allogeneic and syngeneic (identical twin) tranplantation for over 20 years. ... The diseases and issues currently being studied by the IBMTR and ABMTR are: acute and chronic leukemias, Hodgkin and non-Hodgkin lymphoma, multiple myeloma, breast cancer, T-cell depletion, and cytokines. We address questions regarding short- and long-term outcome in defined groups of patients, relevant prognostic factors, efficacy of different transplant approaches, and immune-mediated antitumor effects. Recent collaborations with large chemotherapy cooperative groups allow us to compare chemotherapy with tranplants in situations where randomized clinical trials are difficult or impossible to conduct."

International Myeloma Foundation
http://myeloma.org/

"The IMF is a non-profit organization dedicated to improving the quality of life for multiple myeloma patients while working towards prevention and a cure." The site has information about myeloma, including a patient guide written by patients; fund-raising programs; contact information for on-line and in-person support groups.

Sickle Cell Disease Association of America
http://www.sicklecelldisease.org/

SCDAA assists the public with advocacy, education and other initiatives to promote awareness about Sickle Cell Disease and provide support for patients. The website has information on resources, affiliate programs, membership, support groups, and a chat room.

Leukemia and Lymphoma Society
http://www.leukemia-lymphoma.org/hm_lls

"The Leukemia and Lymphoma Society's mission is to cure leukemia and its related cancers - lymphoma, multiple myeloma and hodgkin's disease - and improve the quality of life of patients and their families; support the best researchers investigating the causes, treatment and cures for leukemia and educate health professionals about the latest advances in diagnosis and treatment." LSA has fully developed Web based connectivity to other pertinent links, downloadable current information about the disease including pamphlets in English and Spanish as well as on-location searching capability.

VHL Family Alliance
http://www.vhl.org/

The VHL Family Alliance provides information for families and physicians about Von Hippel-Lindau Disease (VHL), a genetic condition involving the abnormal growth of blood vessels. This site contains a listing of national and international support groups, informational handbook about VHL, issues of the VHL Family Forum Newsletter, and links to other VHL sites.

World Federation of Hemophilia
http://www.wfh.org/index.asp?lang=EN

WFH is "an international not-for-profit organization dedicated to introducing, improving and maintaining care for persons with hemophilia and related disorder by using the medical and lay expertise of committed volunteers to help member organisations, healthcare providers and governments to deliver quality care." The site has information on hemophilia by topics, online literature, membership information, and news on research.