Directory of Hematologic Diseases Organizations
This directory lists Government agencies and professional and voluntary associations that provide hematologic diseases-related information and resources. Some of these organizations offer educational materials and other services to patients and the general public, while others primarily serve health care professionals.
American Association of Blood Banks (AABB)
8101 Glenbrook Road
Bethesda, MD 20814–2749
Phone: 301–907–6977
Fax: 301–907–6895
Email: aabb@aabb.org
Internet: www.aabb.org
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 newsletter); Standards Source (quarterly online updates about testing, collection, therapies, and other processes).
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American Hemochromatosis Society, Inc. (AHS)
4044 West Lake Mary Boulevard, Unit #104, PMB 416
Lake Mary, FL 32746–2012
Phone: 1–888–655–IRON (4766) or 407–829–4488
Fax: 407–333–1284
Email: mail@americanhs.org
Internet: www.americanhs.org
Mission: To educate and support people with hemochromatosis—genetic iron overload—and to educate the medical community about the latest research on the disease.
Materials: Free educational materials; email/telephone patient support; physician referral services; online support groups.
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The American Porphyria Foundation (APF)
4900 Woodway, Suite 780
Houston, TX 77056–1837
Phone: 1–866–APF–3635 (1–866–273–3635) or 713–266–9617
Fax: 713–840–9552
Email: porphyrus@aol.com
Internet: www.porphyriafoundation.com
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. The APF also serves as an advocate to other public, private, and government agencies interested in funding research and educational programs.
Materials: Acute Intermittent Porphyria, Porphyria Cutanea Tarda (PCT), ALAD Porphyria (ADP), Hepatoerythropoietic Porphyria (HEP), Hereditary Coproporphyria (HCP), Variegate Porphyria (VP), and Erythropoietic Protoporphyria (EPP) (informational brochures); newsletter.
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American Red Cross
2025 E Street NW
Washington, DC 20006
Phone: 703–2067–6000
Email: ncacinfo@redcrossnca.org
Internet: www.redcross.org
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); community disaster education materials.
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American Society of Apheresis (ASFA)
375 West 5th Avenue, Suite 201
Vancouver, BC, Canada V5Y 1J6
Phone: 604–484–2851
Fax: 604–874–4378
Email: asfa@apheresis.org
Internet: www.apheresis.org
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); Apheresis Newsflash (update on news and events in the apheresis field).
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American Society of Clinical Oncology
2318 Mill Road, Suite 800
Alexandria, VA 22314
Phone: 571–483–1300
Internet: www.asco.org
Mission: To improve cancer care and prevention, advance the education of oncology professionals, advocate for policies that provide access to high-quality cancer care, and 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; ASCO News and Forum (quarterly news magazine); patient education website (www.cancer.net).
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American Society of Gene Therapy (ASGT)
555 East Wells Street, Suite 1100
Milwaukee, WI 53202
Phone: 414–278–1341
Fax: 414–276–3349
Email: info@asgt.org
Internet: www.asgt.org
Mission: To promote the understanding, development, and application of gene and related cell and nucleic acid therapies and promote professional and public education.
Materials: ASGT News; Molecular Therapy (journal); online gene therapy glossary; position statements; guidelines; coursework materials.
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American Society of Hematology (ASH)
1900 M Street NW, Suite 200
Washington, DC 20036
Phone: 202–776–0544
Fax: 202–776–0545
Email: ash@hematology.org
Internet: www.hematology.org
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 curricula; teaching cases; CD–ROMs; digital image bank; Hematology (annual education program book); Blood (journal); The Hematologist (bimonthly news and reports).
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American Society of Pediatric Hematology/Oncology (ASPHO)
4700 West Lake Avenue
Glenview, IL 60025–1485
Phone: 847–375–4716
Email: info@aspho.org
Internet: www.aspho.org
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); ASPHO Forum (email discussion group).
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America’s Blood Centers (ABC)
725 15th Street NW, Suite 700
Washington, DC 20005
Phone: 202–393–5725
Fax: 202–393–1282
Email: abc@americasblood.org
Internet: www.americasblood.org
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); Stoplight (tracks daily blood supply levels at local blood banks).
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Aplastic Anemia and MDS International Foundation, Inc. (AA&MDSIF)
P.O. Box 310
Churchton, MD 20733
Phone: 1–800–747–2820
Fax: 410–867–0240
Email: help@aamds.org
Internet: www.aamds.org
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 hemoglobinuria, and other bone marrow failure diseases.
Materials: Patient Organizer; information packets about bone marrow diseases; Teachers and Nurses Guide to Bone Marrow Failure; Talking to Children About Bone Marrow Failure; monthly e-bulletin; quarterly newsletter.
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Children’s Cancer and Blood Foundation (CCBF)
333 East 38th Street, Suite 830
New York, NY 10016
Phone: 212–297–4336
Fax: 212–888–7724
Email: info@childrenscbf.org
Internet: www.childrenscbf.org
Mission: To support the comprehensive clinical care of children living with blood disorders, foster research to help understand the causes of childhood blood disorders, and sponsor the fellowship training of pediatricians in the subspecialty of pediatric hematology and oncology.
Materials: The Key (quarterly newsletter); online medical information about children’s blood diseases; online library of articles and resources.
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Cooley’s Anemia Foundation (CAF)
330 Seventh Avenue, #900
New York, NY 10001
Phone: 1–800–522–7222
Fax: 212–279–5999
Email: info@cooleysanemia.org
Internet: www.thalassemia.org
Mission: To advance the treatment and cure of Cooley’s anemia/thalassemia major, enhance the quality of life of 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; LIFELINE and CAF Medical Update (biannual newsletters); Thalassemia Action Group (patient support-group newsletter).
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Diamond Blackfan Anemia Foundation, Inc. (DBAF)
P.O. Box 1092
West Seneca, NY 14224
Email: info@dbafoundation.org
Internet: www.dbafoundation.org
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 newsletter); family support group websites; online stories and letters, articles, glossary, and research updates.
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Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, OR 97401
Phone: 1–888–FANCONI (1–888–326–2664) or 541–687–4658
Fax: 541–687–0548
Email: info@fanconi.org
Internet: www.fanconi.org
Mission: To find effective treatments and a cure for Fanconi anemia and provide education and support services to affected families worldwide.
Materials: Family Newsletter (biannual newsletter); Science Letter (annual newsletter); FA Courier (biannual research update); Fanconi Anemia: A Handbook for Families and Their Physicians; Fanconi Anemia: Standards for Clinical Care.
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The Hemochromatosis Information Center
2722 Wade Hampton Boulevard, Suite A
Greenville, SC 29615
Phone: 1–888–565–4766
Fax: 864–292–1878
Email: patientservices@irondisorders.org
Internet: www.hemochromatosis.org
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; The Hemochromatosis Cookbook; other books and charts.
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Hemophelia Federation of America (HFA)
1405 West Pinhook Road, Suite 101
Lafayette, LA 70503
Phone: 1–800–230–9797 or 337–261–9787
Fax: 337–261–1787
Email: info@hemophiliafed.org
Internet: www.hemophiliafed.org
Mission: To assist and advocate for the bleeding disorders community.
Materials: Dateline Federation (quarterly newsletter); online chat rooms and support groups; special programs for new families, teenagers, and other populations.
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Hereditary Hemorrhagic Telangiectasia Foundation International, Inc.
P.O. Box 329
Monkton, MD 21111
Phone: 1–800–448–6389
Fax: 410–357–9932
Email: hhtinfo@hht.org
Internet: www.hht.org
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); online educational materials.
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Histiocytosis Association of America (HAA)
332 North Broadway
Pitman, NJ 08071
Phone: 1–800–548–2758 or 856–589–6606
Fax: 856–589–6614
Email: JMT4Histio@aol.com
Internet: www.histio.org
Mission: To provide a variety of educational programs and patient support services and 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; educational brochures.
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International Myeloma Foundation (IMF)
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607
Phone: 1–800–452–CURE (2873) or 818–487–7455
Fax: 818–487–7454
Email: TheIMF@myeloma.org
Internet: www.myeloma.org
Mission: To improve the quality of life of people with myeloma while working toward prevention and a cure.
Materials: Myeloma Today (quarterly newsletter); IMF Info Pack; other educational materials.
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International Society for Experimental Hematology (ISEH)
2025 M Street NW, Suite 800
Washington, DC 20036–3309
Phone: 202–367–1183
Fax: 202–367–2183
Email: iseh@dc.sba.com
Internet: www.iseh.org
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); programs and publications in training and education.
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International Society on Thrombosis and Haemostasis (ISTH)
610 Jones Ferry Road, Suite 205
Carrboro, NC 27510
Phone: 919–929–3807
Fax: 919–929–3935
Email: info@isth.org
Internet: www.isth.org
Mission: To foster and advance science relating to thrombosis and abnormalities of haemostasis and vascular biology; provide a forum for discussion of these problems; encourage research on these problems by scientists of the several relevant disciplines; foster the diffusion and exchange of ideas and information through scientific meetings and publications; and standardize nomenclature and methods.
Materials: Journal of Thrombosis and Haemostasis; communications of the Scientific and Standardization Committees.
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Iron Disorders Institute (IDI)
2722 Wade Hampton Boulevard, Suite A
Greenville, SC 29615
Phone: 1–888–565–IRON (4766) or 864–292–1175
Fax: 864–292–1878
Email: PatientServices@irondisorders.org
Internet: www.irondisorders.org
Mission: To reduce pain, suffering, and unnecessary death by disorders of iron through education, awareness, and research facilitation.
Materials: idIntouch (newsletter); Iron Bytes (online tool for health professionals); Guide to Hemochromatosis, Guide to Anemia, Cooking With Less Iron, and Exposing the Hidden Dangers of Iron (books); Personal Health Profile and Physician’s Reference Chart (forms); idInsight (e-publication).
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Iron Overload Diseases Association (IOD)
P.O. Box 15857
West Palm Beach, FL 33416
Phone: 1–866–768–8629 or 561–586–8246
Fax: 561–586–8248
Email: iod@ironoverload.org
Internet: www.ironoverload.org
Mission: To conduct professional education symposia 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 U.S. Food and Drug Administration; encourage research; maintain an international clearinghouse; offer public information through the media; develop chapters and self-help groups; and sponsor annual symposia and IOD Awareness Week.
Materials: Overload: An Ironic Disease (booklet); Ironic Blood (bimonthly newsletter); Iron Overload Alert (informational brochure); fact sheets.
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The Leukemia & Lymphoma Society (LLS)
1311 Mamaroneck Avenue, Suite 310
White Plains, NY 10605
Phone: 1–800–955–4572 or 914–949–5213
Fax: 914–949–6691
Email: infocenter@LLS.org
Internet: www.leukemia-lymphoma.org
Mission: To cure leukemia, lymphoma, Hodgkin’s disease, and myeloma and improve the quality of life of patients and their families.
Materials: Booklets and fact sheets about diseases, treatments, and support services, many of which are available online and in French and Spanish.
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Lymphoma Research Foundation (LRF)
115 Broadway, 13th Floor
New York, NY 10006
Phone: 1–800–235–6848 or 212–349–2910
Helpline: 1–800–500–9976
Fax: 212–349–2886
Email: helpline@lymphoma.org
Internet: www.lymphoma.org
Mission: To eradicate lymphoma and serve those affected by the disease.
Materials: Booklets and fact sheets about the different types of lymphomas; “Ask the Doctor” and other local workshops; lymphoma support network.
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March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: 1–888–MODIMES (1–888–663–4637) or 914–997–4488
Fax: 914–428–8203
Email: askus@marchofdimes.com
Internet: www.marchofdimes.com
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 about prenatal care, birth defects, and prematurity; nursing modules; monthly newsletter; newborn screening recommendations.
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National Hemophilia Foundation (NHF)
116 West 32nd Street, 11th Floor
New York, NY 10001
Phone: 1–800–42–HANDI (1–800–424–2634) or 212–328–3700
Fax: 212–328–3777
Email: handi@hemophilia.org
Internet: www.hemophilia.org
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; NHF e*Notes (online newsletter).
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National Marrow Donor Program (NMDP)
3001 Broadway Street Northeast, Suite 100
Minneapolis, MN 55413–1753
Phone: 1–800–MARROW2 (1–800–627–7692)
Email: patientinfo@nmdp.org
Internet: www.marrow.org
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; patient information materials.
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National Organization for Rare Disorders (NORD)
55 Kenosia Avenue, P.O. Box 1968
Danbury, CT 06813
Phone: 1–800–999–6673 or 203–744–0100
TDD: 203–797–9590
Fax: 203–798–2291
Email: orphan@rarediseases.org or RN@rarediseases.org
Internet: www.rarediseases.org
Mission: To help people with rare “orphan” diseases and assist the organizations that serve them. The NORD is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.
Materials: Orphan Disease Update (member newsletter); NORD Resource Guide; Physicians’ Guide to Rare Diseases; free booklets for physicians about several rare disorders.
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Plasma Protein Therapeutics Association (PPTA)
147 Old Solomons Island Road, Suite 100
Annapolis, MD 21401
Phone: 410–263–8296
Fax: 410–263–2298
Email: ppta@pptaglobal.org
Internet: www.pptaglobal.org
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).
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Platelet Disorder Support Association (PDSA)
P.O. Box 61533
Potomac, MD 20859
Phone: 1–87–PLATELET (1–877–528–3538) or 301–770–6636
Fax: 301–770–6638
Email: pdsa@pdsa.org
Internet: www.pdsa.org
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; fact sheets; medical emergency card for people with ITP; The Platelet News (quarterly newsletter).
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Sickle Cell Disease Association of America, Inc. (SCDAA)
231 East Baltimore Street, Suite 800
Baltimore, MD 21202
Phone: 1–800–421–8453 or 410–528–1555
Fax: 410–528–1495
Email: scdaa@sicklecelldisease.org
Internet: www.sicklecelldisease.org
Mission: To promote finding a universal cure for sickle cell disease while improving the quality of life of individuals and families affected by sickle cell and related conditions.
Materials: Online forums; What is SCD? (online fact sheet); Frequently Asked Questions (online); online glossary.
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National Hematologic Diseases Information Service
7 Information Way
Bethesda, MD 20892–3571
Phone: 1–888–828–0877
TTY: 1–866–569–1162
Fax: 1–703–738–4929
Email: hematologic@info.niddk.nih.gov
Internet: http://hematologic.niddk.nih.gov
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.
May 2009
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