Directory of Hematologic Diseases Organizations
American Association of Blood Banks
8101 Glenbrook Road
Bethesda, MD 20814–2749
Mission: To advance the practice and standards of transfusion medicine and related cellular and biological therapies.
Materials: AABB News (magazine), AABB Weekly Report, Regulatory Update (online biweekly), and Standards Source (quarterly online updates on testing, collection, therapies, and other processes).
American Hemochromatosis Society, Inc.
4044 W. Lake Mary Boulevard, #104
Lake Mary, FL 32746–2012
Phone: 1–888–655–IRON (4766) or 407–829–4488
Mission: To educate and support hemochromatosis (genetic iron overload) patients and to educate the medical community on the latest research on the disease.
Materials: Free educational materials and email/telephone patient support, as well as physician referral services and online support groups.
The American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056–1837
Phone: 1–866–APF–3635 or 713–266–9617
Mission: To enhance public awareness about porphyria, develop and distribute educational materials for patients and physicians, and support research to improve treatment and lead to a cure.
Materials: Informational brochures—Acute Intermittent Porphyria, Porphyria Cutanea Tarda (PCT), ALAD Porphyria (ADP), Hepatoerythropoietic Porphyria (HEP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP), and Erythropoietic Protoporphyria (EPP); newsletter.
American Red Cross
2025 E Street, NW
Washington, DC 20006
Disaster Assistance: 1–866–GETINFO or 1–866–438–4636
Mission: To provide relief to victims of disaster and help people prevent, prepare for, and respond to emergencies. Red Cross services include community services that help the needy; collection, processing, and distribution of lifesaving blood and blood products; educational programs that promote health and safety; and international relief and development aid.
Materials: Babysitter’s Handbook, First Aid Fast, Pet First Aid, HIV/AIDS Fact Book, Immunohematology (quarterly journal), and community disaster education materials.
American Society of Apheresis
375 West 5th Avenue, Suite 201
Vancouver, BC, Canada V5Y 1J6
Mission: To serve as a leader in the field of apheresis through patient and donor care, research, education, and advocacy.
Materials: Therapeutic Apheresis: A Physician’s Handbook (1st Edition, 2005), Principles of Apheresis Technology (3rd Edition, 2002), Journal of Clinical Apheresis—Special Review Issue (Volume 15, 2000), and Apheresis Newsflash (update on news and events in the apheresis field).
American Society of Clinical Oncology
1900 Duke Street, Suite 200
Alexandria, VA 22314
Mission: To improve cancer care and prevention, to advance the education of oncology professionals, to advocate for policies that provide access to high-quality cancer care, and to support the clinical trials system and the need for increased clinical and translational research.
Materials: Journal of Clinical Oncology, Journal of Oncology Practice, annual meeting summaries, and ASCO News and Forum (quarterly news magazine).
American Society of Gene Therapy
555 East Wells Street, Suite 1100
Milwaukee, WI 53202
Mission: To promote the understanding, development, and application of gene and related cell and nucleic acid therapies, and to promote professional and public education.
Materials: ASGT News, Molecular Therapy (journal), online gene therapy glossary, position statements, guidelines, and coursework materials.
American Society of Hematology
1900 M Street, NW, Suite 200
Washington, DC 20036
Mission: To further the understanding, diagnosis, treatment, and prevention of disorders affecting the blood, bone marrow, and the immune, blood, and vascular systems. The organization promotes research, clinical care, education, training, and advocacy in hematology.
Materials: Online curriculums, teaching cases, CD-ROMs, digital image bank, Hematology (annual education program book), Blood (journal), and The Hematologist: ASH News and Reports.
American Society of Pediatric Hematology/Oncology
4700 W. Lake
Glenview, IL 60025–1485
Mission: To promote optimal care of children and adolescents with blood disorders and cancer by advancing research, education, treatment, and professional practice.
Materials: Pediatric Blood and Cancer (monthly journal), membership directory, bimonthly President’s Letter (current news and information), and ASPHO Forum (email discussion group).
America’s Blood Centers
725 15th Street, NW, Suite 700
Washington, DC 20005
Mission: To help member blood centers serve their communities.
Materials: The ABC Newsletter (weekly); Blood Bulletin (quarterly journal); Blood Counts (reports on blood bank finances and operations); My Blood, Your Blood (school curriculum); and Stoplight (tracks daily blood supply levels at local blood banks).
Aplastic Anemia and MDS International Foundation, Inc.
P.O. Box 613
Annapolis, MD 21404–0613
Mission: To serve as a resource for patient assistance, advocacy, and support by providing educational materials and medical information. The organization also funds research to find treatments and cures for aplastic anemia, myelodysplastic syndromes, paroxysmal nocturnal hemogloburina, and other bone marrow failure diseases.
Materials: Patient Organizer, information packets on bone marrow diseases, Teachers and Nurses Guide to Bone Marrow Failure, Talking to Children About Bone Marrow Failure, e-bulletin (monthly), and newsletter (quarterly).
Children’s Blood Foundation
111 West 57th Street, Suite 420
New York, NY 10019
Mission: To support the comprehensive clinical care of children living with blood disorders; to foster research to help understand the causes of childhood blood disorders; and to sponsor the fellowship training of pediatricians in the subspecialty of pediatric hematology and oncology.
Materials: The Key (quarterly newsletter), online medical information on children’s blood diseases, and online library of articles and resources for these diseases.
Cooley’s Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
Mission: To advance the treatment and cure of Cooley’s anemia/thalassemia major, enhance the quality of life for patients, and educate the medical community, trait carriers, and the public about the various forms of this genetic blood disease.
Materials: Videos, booklets, medical books, CAF Medical Update (biannual newsletter), LIFELINE (biannual newsletter), and Thalassemia Action Group (patient support-group newsletter).
Diamond Blackfan Anemia Foundation, Inc.
P.O. Box 1092
West Seneca, NY 14224
Mission: To raise funds to support research, publication, and teaching; raise awareness of the disorder; and provide support to patients and families.
Materials: DBA Newsletter (quarterly), family support group websites, and online stories and letters, articles, glossary, and research updates.
Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, OR 97401
Phone: 541–687–4658 or 1–800–828–4891
Mission: To find effective treatments and a cure for Fanconi anemia, and to provide education and support services to affected families worldwide.
Materials: Family Newsletter (biannual), Science Letter (annual), FA Courier (biannual research update), Fanconi Anemia: A Handbook for Families and Their Physicians, and Fanconi Anemia: Standards for Clinical Care.
Hemochromatosis Foundation, Inc.
2722 Wade Hampton Boulevard, Suite A
Greenville, SC 29615
Mission: To increase awareness of the disorder and related issues among the public, professionals, and government agencies; encourage routine screenings; and promote research.
Materials: Quarterly newsletter, Guide to Hemochromatosis, Physician’s Reference Chart, Cooking With Less Iron, and other books and charts.
Hemophelia Federation of America
1405 W. Pinhook Road, Suite 101
Lafayette, LA 70503
Mission: To assist and advocate for the bleeding disorders community.
Materials: Dateline Federation (quarterly newsletter), online chat rooms and support groups, and special programs for new families, teenagers, and other populations.
Histiocytosis Association of America
332 North Broadway
Pitman, NJ 08071
Toll free: 1–800–548–2758 (US and Canada only)
Contact: Jeffrey M. Toughill, President
Mission: To provide a variety of educational programs and patient support services. To promote scientific research on histiocytosis, with the aim of establishing better treatments, a cure, and ultimately prevention of these diseases.
Materials: Histio News (newsletter), President’s Updates, and educational brochures.
Hereditary Hemorrhagic Telangiectasia Foundation International, Inc.
P.O. Box 329
Monkton, MD 21111
Mission: To support people with hereditary hemorrhagic telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome; to provide patients, families, and doctors with educational information; to foster an exchange of information about the diagnosis and treatment of HHT between patients, the medical community, and other interested groups; and to raise funds for genetic and clinical research.
Materials: Direct Connection (newsletter) and online educational materials.
International Myeloma Foundation
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607
Phone: 818–487–7455 or 1–800–452–CURE (2873)
Mission: To improve the quality of life of people with myeloma while working toward prevention and a cure.
Materials: Myeloma Today (quarterly newsletter), the IMF Info Pack, and other educational materials.
International Society for Experimental Hematology
2025 M Street, NW, Suite 800
Washington, DC 20036–3309
Mission: To further basic translational and clinical research and to foster communication, education, and collaboration in the fields of experimental hematology and stem cell biology.
Materials: Experimental Hematology (yearly journal) and programs and publications in training and education.
International Society on Thrombosis and Haemostasis
610 Jones Ferry Road, Suite 205
Carrboro, NC 27510
Mission: To foster and advance science relating to thrombosis and abnormalities of haemostasis and vascular biology; to provide a forum for discussion of these problems; to encourage research on these problems by scientists of the several relevant disciplines; to foster the diffusion and exchange of ideas and information through scientific meetings and publications; and to standardize nomenclature and methods.
Materials: Journal of Thrombosis and Haemostasis and communications of the Scientific and Standardization Committees.
Iron Disorders Institute
2722 Wade Hampton Boulevard, Suite A
Greenville, SC 29615
Phone: 1–888–565–IRON (4766) or 864–292–1175
Mission: To reduce pain, suffering, and unnecessary death by disorders of iron through education, awareness, and facilitating research.
Materials: idIntouch (newsletter, six times a year); Iron Bytes (online tool for health professionals); and the books Guide to Hemochromatosis, Guide to Anemia, Cooking With Less Iron, and Exposing the Hidden Dangers of Iron.
Iron Overload Diseases Association, Inc.
P.O. Box 15857
West Palm Beach, FL 33416–5857
Mission: To conduct professional education symposiums and exhibits at medical meetings; serve and counsel patients with hemochromatosis and their families; offer doctor referrals; promote patient advocacy concerning insurance, Medicare, blood banks, and the Food and Drug Administration; encourage research; maintain an international clearinghouse; offer public
information through the media; develop chapters and self-help groups; sponsor annual symposiums and annual IOD Awareness Week.
Materials: Booklet—Overload: An Ironic Disease; bimonthly newsletter—Ironic Blood; information brochure—Iron Overload Alert; fact sheet.
The Leukemia & Lymphoma Society
1311 Mamaroneck Avenue, Suite 310
White Plains, NY 10605
Phone: 914–949–5213 or 1–800–955–4572
Mission: To cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and to improve the quality of life of patients and their families.
Materials: Booklets and fact sheets on diseases, treatments, and support services (many available online and also available in French and Spanish).
Lymphoma Research Foundation
111 Broadway, 19th Floor
New York, NY 10006
Phone: 212–349–2910 or 1–800–235–6848
Mission: To eradicate lymphoma and serve those touched by the disease.
Materials: Booklets and fact sheets on the different types of lymphomas, “Ask the Doctor” and other local workshops, and lymphoma support network.
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: 1–888–MODIMES or 914–997–4488
Mission: To improve the health of babies by preventing birth defects, premature birth, and infant mortality through research, community services, education, and advocacy.
Materials: Educational materials on prenatal care, birth defects, and prematurity; nursing modules; monthly newsletter; and newborn screening recommendations.
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY 10001
Phone: 1–800–42–HANDI or 212–328–3700
Mission: To find better treatments and cures for bleeding and clotting disorders and to prevent the complications of these disorders through education, advocacy, and research.
Materials: Article reprints, textbooks, educational materials, CD-ROMs, videos, HemAware (bimonthly magazine), HemAware Jr. for kids, and NHF e*Notes (online newsletter).
National Marrow Donor Program
3001 Broadway Street Northeast, Suite 500
Minneapolis, MN 55413–1753
Phone: 1–800–MARROW2 or 1–800–627–7692
Mission: To help people who need a lifesaving marrow or blood cell transplant. The organization connects patients, doctors, donors, and researchers to resources they need to help more people live longer, healthier lives.
Materials: Work of the National Donor Program—2005 Report to the Community, The Marrow Messenger (annual newsletter), Biennial Report of the National Bone Marrow Donor Registry, and patient information materials.
National Organization for Rare Disorders
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813–1968
Phone: 1–800–999–6673 or 203–744–0100
Email: firstname.lastname@example.org or RN@rarediseases.org
Carolyn Asbury, Ph.D., Chair
Mission: A unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them; committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.
Materials: Member newsletter—Orphan Disease Update (ODU); NORD Resource Guide; Physicians Guide for Rare Disorders; booklets—free guides for physicians about several rare disorders.
Plasma Protein Therapeutics Association
147 Old Solomons Island Road, Suite 100
Annapolis, MD 21401
Mission: To promote the availability of and access to safe and effective plasma protein therapeutics for patients worldwide.
Materials: eSource (online magazine), Frequently Asked Questions (online), Find a Donor Center (online search).
Platelet Disorder Support Association
P.O. Box 61533
Potomac, MD 20859
Phone: 1–87–PLATELET (1–877–528–3538) or 301–770–6636
Mission: To provide information and support to people with immune thrombocytopenic purpura (ITP) and other platelet disorders, and to encourage research about ITP and other platelet disorders.
Materials: Brochures and fact sheets, ITP Coloring Book for Children, medical emergency card for people with ITP, The Platelet News (quarterly newsletter).
Sickle Cell Disease Association of America, Inc.
231 East Baltimore Street, Suite 800
Baltimore, Maryland 21202
Phone: 410–528–1555 or 1–800–421–8453
Mission: To promote finding a universal cure for sickle cell disease while improving the quality of life for individuals and families affected by sickle cell and related conditions.
Materials: Online forums, What is SCD? (online fact sheet), Frequently Asked Questions (online), and online glossary.
National Hematologic Diseases Information Service
7 Information Way
Bethesda, MD 20892–3571
The National Hematologic Diseases Information Service is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), one of eight health agencies of the Public Health Service, which is under the U.S. Department of Health and Human Services.
The NIDDK conducts and supports biomedical research. As a public service the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.
Publications produced by the NIDDK are carefully reviewed by both NIDDK scientists and outside experts.
This publication is not copyrighted. The NIDDK encourages users of this publication to duplicate and distribute as many copies as desired.
NIH Publication No. 07–3567