American Resource Guide -

Chronic Illness

A chronic Illness is defined as a disorder that affects one or more of the body’s neurological, circulatory, respiratory or immune systems. The severity and duration of chronic illnesses may vary.

American Cancer Society
The American Cancer Society is dedicated to eliminating cancer and provides information, support, and fact sheets relating to various forms of cancer and cancer prevention. Specialists are available 24 hours a day to answer questions. Materials are available in Chinese, Korean, Spanish, and Vietnamese.
Address:
American Cancer Society
1599 Clifton Rd. NE
Atlanta, GA 30329
Voice: 800-227-2345
Website: www.cancer.org

American Diabetes Association
The American Diabetes Association is dedicated to diabetes research and to providing information and advocacy services. The association provides information and fact sheets. Materials are available in (but not limited to) Hindi, Hmong, Korean, Spanish, and Vietnamese. The association’s website posts community events.
Address:
American Diabetes Association
1701 N. Beauregard Street
Alexandria, VA 22311
Voice: 800-342-2383
E-mail: AskADA@diabetes.org
Website: www.diabetes.org

American Heart Association
The American Heart Association is dedicated to reducing disability and death from cardiovascular diseases and stroke. The association provides information, publications, and resources regarding heart disease and stroke and makes available to the public classes in CPR and emergency cardiovascular care. The association’s website provides a list of chapters and information in Spanish.
Address:
American Heart Association
7272 Greenville Avenue
Dallas, TX 75231
Voice: 800-242-8721
E-mail: inquire@amhrt.org
Website: www.americanheart.org

American Liver Foundation
The American Liver Foundation promotes liver health and disease prevention and provides research, education, and advocacy services for those with hepatitis and other liver-related disease. The foundation’s website offers a list of chapters, as well as fact sheets on diabetes and hepatitis. Materials are available in Spanish.
Address:
American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038
Voice: 800-465-4837
Fax: 212-483-8179
E-mail: info@liverfoundation.org
Website: www.liverfoundation.org

American Lung Association
The American Lung Association combats all forms of lung disease, with an emphasis on asthma, tobacco control, and environmental health. The association provides information, publications, and community-based awareness programs. Spanish language materials are available in both print and on the website, which also contains a list of local chapters.
Address:
American Lung Association
61 Broadway, 6th Floor
New York, NY 10006
Voice: 800-586-4872
Fax: 800-548-8252
E-mail: info@lungusa.org
Website:www.lungusa.org

Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
The Aplastic Anemia & MDS International Foundation is dedicated to research into the treatment and cure of Aplastic Anemia and related bone-marrow diseases. The foundation provides patient assistance, advocacy services, brochures, fact sheets, and support. Educational materials and medical information are available on the AAMDS website in English, French, German, Italian, Russian, and Spanish. A list of chapters can also be found on the website.
Address:
Aplastic Anemia & MDS
International Foundation
P.O. Box 613
Annapolis, MD 21404-0613
Voice: 800-747-2820
Fax: 410-867-0240
E-mail: help@aamds.org
Website: www.aamds.org

Arthritis Foundation
The Arthritis Foundation provides advocacy and program services, and research for over one hundred types of arthritis and related conditions. The foundation publishes educational materials, fact sheets, recipes, and newsletters. Spanish language materials are also available. The foundation’s website contains a list of community events and local chapters.
Address:
Arthritis Foundation
P.O. Box 7669
Atlanta, GA 30357-0669
Voice: 800-568-4045
E-mail: help@arthritis.org
Website: www.arthritis.org

Asthma and Allergy Foundation of America
Asthma and Allergy Foundation of America is dedicated to improving the quality of life for people with asthma and allergies through advocacy and research. Fact sheets and newsletters are available in Spanish. The Foundation has chapters in Alaska, Florida, Kansas City, Maryland, Michigan, New England, North Texas, Oregon, St. Louis, Southeastern Pennsylvania, Southern California, and Washington State.
Address:
Asthma and Allergy Foundation of America
1233 20th Street, NW, Suite 402
Washington, DC 20036
Voice: 800-7-ASTHMA (727-8462)
Fax: 202-466-8940
E-mail: info@aafa.org
Website: www.aafa.org

Cystic Fibrosis Foundation (CFF)
The Cystic Fibrosis Foundation is dedicated to finding a cure for cystic fibrosis and to improving the quality of life for those with CFF. The foundation provides advocacy services, information, publications, and newsletters. The CFF website contains a list of community events and chapters.
Address:
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Voice: 800-344-4823
Fax: 301-951-6378
E-mail: info@cff.org
Website: www.cff.org

Crohn’s & Colitis Foundation of America
The Chrohn’s & Coitis Foundation of America is dedicated to research, education, and improving the quality of life for children and adults with digestive diseases. The foundation provides information, fact sheets, brochures, and resources pertaining to digestive diseases. Materials are available in Spanish. A list of community events and chapters can be found on the foundation’s website.
Address:
Crohn’s & Colitis Foundation of America
386 Park Avenue South, 17th Foor
New York, NY 10016
Voice: 800-932-2423
E-mail: info@ccfa.org
Website: www.ccfa.org

Huntington’s Disease Society of America (HDSA)
HDSA promotes and supports both clinical and basic Huntington’s Disease research, aids families, and educates the public and health care professionals about Huntington’s Disease through its publications, fact sheets, and website; the website also contains a list of community events and chapters.
Address:
Huntington’s Disease Society of America
158 West 29th Street, 7th Floor
New York, NY 10001-5300
Voice: 800-345-4372
Fax: 212-239-3430
E-mail: hdsainfo@hdsa.org
Website: www.hdsa.org

Immune Deficiency Foundation
The Immune Deficiency Foundation is dedicated to improving the treatment of immune deficiency diseases through research, advocacy, education, and peer support programs. Materials are available in Spanish. A list of community events and chapters can be found on the foundation’s website.
Address:
Immune Deficiency Foundation
40 W. Chesapeake Avenue, Suite 308
Towson, MD 21204
Voice: 800 296-4433
E-mail: idf@primaryimmune.org
Website: www.primaryimmune.org

Leukemia and Lymphoma Society
The Leukemia and Lymphoma Society is dedicated to funding blood cancer research and providing patient services. The society publishes pamphlets and fact sheets about blood-related cancers, organizes workshops, and supports research. The website provides discussion boards and a list of community events. Materials are available in English, French, Portuguese, and Spanish.
Address:
Leukemia and Lymphoma Society —
Home Office
1311 Mamaroneck Ave.
White Plains, NY 10605
Voice: 914-949-5213
Fax: 914-949-6691
E-mail: Infocenter@leukemia-lymphoma.org
Website: www.leukemia-lymphoma.org

March of Dimes Birth Defects Foundation
March of Dimes researchers, volunteers, educators, outreach workers, and advocates work together to provide research and advocacy and community services, education, and information. Materials are available in Spanish. A list of community events and chapters can be found on the foundation’s website.
Address:
March of Dimes Birth
Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Voice: 888-663-4637
E-mail: askus@marchofdimes.com
Website: www.marchofdimes.com
Spanish Website: www.nacersano.com

National Alliance of State and Territorial AIDS Directors
The National Alliance of State and Territorial AIDS Directors represents the nation’s state health agency staff who have responsibility for administering the AIDS health care, prevention, education, and supportive service programs funded by state and federal governments. The organization provides education, publications, and support services. Materials are available in Spanish.
Address:
National Alliance of State and Territorial AIDS Directors
444 North Capitol Street, NW, Suite 339
Washington, DC 20001
Voice: 202-434-8090
Fax: 202-434-8092
E-mail: nastad@nastad.org
Website: www.nastad.org

National Cancer Institute
The National Cancer Institute, a division of the government-funded National Institutes of Health, conducts and supports research and training, and disseminates health information regarding cancer. The institute provides information, fact sheets, and support to families, statistics, and a free weekly bulletin containing cancer updates. Materials are available in Spanish.
Address:
National Cancer Institute
6116 Executive Boulevard
MSC8322, Room 3036A
Bethesda, MD 20892-8322
Voice: 800-422-6237
TTY: 800-332-8615
E-mail: cancergovstaff@mail.ni h.gov
Website: www.cancer.gov

National Kidney Foundation
The National Kidney Foundation is
dedicated to the prevention of kidney and urinary tract diseases. The foundation provides advocacy services, brochures, fact sheets, an online guide to diseases of the kidney, information for kidney donors and recipients, and an e-letter. Print and online materials are available in Spanish. The foundation’s website contains a list of meetings and events.
Address:
National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Voice: 800-622-9010
Fax: 212-869-9261
E-mail: info@kidney.org
Website: www.kidney.org

National Lymphedema Network
The National Lymphedema Network is dedicated to the prevention and management of primary and secondary lymphedema through support services to patients. The network provides advocacy services, referrals, publications, videos, an online resource guide, a quarterly newsletter, a course for professionals and patients, and other services.
Address:
National Lymphedema Network
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612
Voice: 800-541-3259
Fax: 510-208-3110
E-mail: nln@lymphnet.org
Website: www.lymphnet.org

National Organization for Rare Disorders
The National Organization for Rare Disorders is dedicated to the identification, treatment, and cure of rare disorders (disorders affecting fewer than 200,000 people in the U.S.) through advocacy, research, and education. The organization provides information and publications and maintains a database regarding rare diseases/disorders.
Address:
National Organization on Rare Disorders
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
Voice: 800-999-6673
Fax: 203-798-2291
TTY: 203-797-9590
E-mail: RN@raredisease.org
Website: www.rarediseases.org

Sickle Cell Disease Association of America, Inc.
The Sickle Cell Disease Association of America follows a community-based approach to issues relating to sickle cell disease. The organization provides advocacy services, information, and publications. A list of community events and chapters can be found on the association’s website.
Address:
Sickle Cell Disease Association of America, Inc.
16 Calvert Street, Suite 600
Baltimore, Maryland 21202
Voice: 800-421-8453
Fax: 410-528-1495
E-mail: scdaa@sicklecelldiseases.org
Website: www.sicklecelldisease.org

Developmental Disabilities

A developmental disability is a chronic disability attributed to a mental or physical impairment, or to a combination of mental and physical impairments. Mental Retardation: The American Association on Mental Retardation defines an “individual as mentally retarded when the following three criteria are met: IQ below 70-75, significant limitations exist in two or more adaptive skill areas and the condition is present from childhood.” Mental retardation ranges are: Mild (IQ 55 to 70), Moderate (IQ 40 to 54), Severe (IQ 25 to 39) and Profound (IQ below 25).

Down Syndrome
This congenital condition is characterized by moderate to severe mental retardation, slanting eyes, a broad short skull, and broad hands with short fingers. American Association on Mental Retardation The American Association on Mental Retardation advocates for the human rights and inclusion of people with intellectual disabilities, and promotes research, public awareness, and effective practices for people with intellectual disabilities. The association offers information, fact sheets, and publications. Its website contains a list of community events and chapters.
Address:
American Association on Mental Retardation
444A North Capitol Street, NW, Suite 846
Washington, DC 20001-1512
Voice: 800-424-3688
Fax: 202-387-2193
TTY: 202-387-1968
Website: www.aamr.org

Arc of the United States
The Arc of the United States addresses critical issues related to rights, treatment, services, and programs for individuals with mental retardation. The organization provides education, publications, and family support, as well as preparation for employment and independent living skills for individuals with mental retardation. Materials are available in Spanish. The Arc’s website contains a list of community events and chapters.
Address:
The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
Voice: 301-565-3842
Fax: 301-565-5342
E-mail: info@thearc.org
Website: www.thearc.org

Down Syndrome Research Foundation
The Down Syndrome Research Foundation is dedicated to empowering people with Down syndrome to lead independent and fulfilled lives. The foundation, based in Canada, provides education and training programs, information, and news- letters. The website is in both French and English, with links to other sites. Information is available in Chinese and Korean, as well.
Address:
Down Syndrome Research Foundation
1409 Sperling Avenue
Burnaby, BC V5B4J8
Voice: 604-444-3773
Fax: 604-431-9248
Website: www.dsrf.org

National Association for the Dually Diagnosed (NADD)
National Association for the Dually Diagnosed promotes understanding of individuals who have intellectual or developmental disabilities. The organization provides educational services, training materials, and publications, and offers conferences.
Address:
National Association for the Dually Diagnosed
132 Fair Street
Kingston, NY 12401
Voice: 800-331-5362
E-mail: info@thenadd.org
Website: www.thenadd.org

National Down Syndrome Congress
The National Down Syndrome Congress is dedicated to creating a national climate of dignity and value for persons with Down syndrome through advocacy and education. The organization provides newsletters, publications, and videos about Down Syndrome. Materials, including a parent packet, are available in Spanish.
Address:
National Down Syndrome Congress
1370 Center Drive, Suite 102
Atlanta, GA 30338
Voice: 800-232-6372
E-mail: info@ndsccenter.org
Website: www.ndsccenter.org

National Down Syndrome Society
The National Down Syndrome Society is dedicated to enhancing the quality of life for people with Down syndrome. The society provides advocacy services, information, education, and publications. Materials are available in Spanish. A list of community events and chapters can be found on their website.
Address:
National Down Syndrome Society
666 Broadway, 8th Floor
New York, NY 10012-2317
Voice: 800-221-4602
E-mail: info@ndss.org
Website: www.ndss.org

Special Olympics International
Special Olympics is an international organization dedicated to empowering individuals with intellectual disabilities to be productive, physically fit, and respected members of society through sports training and competition. Special Olympics offers both children and adults with intellectual disabilities year-round training and competition in Olympic-type summer and winter sports. The organization provides sports training for children and adults with intellectual disabilities. A listing of events can be found on their website.
Address:
Special Olympics International
1325 G Street NW, Suite 500
Washington, DC 20005
Voice: 202-628-3630
Fax: 202-824-0200824-0200
E-mail: specialolympics@msn.com

Learning Disabilities

Learning disabilities are specific neurological disorders that affect the brain’s ability to store, process, or communicate information.

International Dyslexia Association
The International Dyslexia Association is dedicated to helping individuals with dyslexia and their families. The association provides advocacy services, information, publications, and fact sheets, and offers conferences. Materials are available in Spanish. A list of community events and chapters is on the association’s website.
Address:
International Dyslexia Association:
Chester Building , Suite 382
8600 LaSalle Road
Baltimore, MD 21286-2044
Voice: 800-222-3122
Fax: 410-321-5069
E-mail: info@interdys.org
Website: www.interdys.org

Learning Disabilities Association of America (LDA)
The Learning Disabilities Association of America is dedicated to identifying the causes of and preventing learning disabilities and provides advocacy services, information, support, education, fact sheets, brochures, and resources. Materials are available in Spanish. A list of community events and chapters may be found on the LDA’s website.
Address:
Learning Disabilities Association of America (LDA)
4156 Library Road
Pittsburgh, PA 15234-1349
Voice: 412-341-1515
Fax: 412-344-0224
E-mail: info@ldaamerica.org
Website: www.ldaamerica.org

National Center for Learning Disabilities (NCLD)
The National Center for Learning Disabilities is dedicated to supporting research and programs that foster effective learning for individuals with learning disabilities. The organization provides advocacy services, information, publications, and fact sheets.
Address:
National Center for Learning Disabilities (NCLD)
381 Park Avenue South, Suite 1401
New York, NY 10016
Voice: 888-575-7373
Fax: 212-545-9665
Website: www.ld.org

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
Children and Adults with Attention- Deficit/Hyperactivity Disorder is dedicated to improving the lives of people with ADD/ADHD through advocacy, research, and education. The organization provides newsletters, brochures, and fact sheets. Materials are available in Spanish. The CHADD website contains a list of chapters.
Address:
Children and Adults with Attention- Deficit/Hyperactivity Disorder
8181 Professional Place, Suite 150
Landover, MD 20785
Voice: 800-233-4050
Fax: 301-306 7090
E-mail: national@chadd.org
Website: www.chadd.org

National Attention Deficit Disorder Association
The National Attention Deficit Disorder Association is dedicated to the diagnosis and treatment of ADD/ADHD, and to promoting strategies and techniques for helping adults with this disorder. The association provides information, fact sheets, and brochures. The website contains special information about women and ADD.
Address:
National Attention Deficit Disorder Association
P.O. Box 543
Pottstown, PA 19464
Voice: 484-945-2101
Fax: 610-970-7520
E-mail: mail@add.org

 

 

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