Where to Find More Information (cont.)

Next Steps After Your Diagnosis

Deafness and Hearing Disorders

Organizations/Information

Directory of Organizations
National Institute on Deafness and Other Communication Disorders
http://www.nidcd.nih.gov/health/directory/index.asp

National Institute on Deafness and Other Communication Disorders
Phone: 800-241-1044
TTY: 800-241-1055
Email: nidcdinfo@nidcd.nih.gov
http://www.nidcd.nih.gov/index.asp

Publications

Deaf or Hard-of-Hearing: Tips for Working with Your Doctor
American Academy of Family Physicians, 2011
http://familydoctor.org/x1875.xml

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Diabetes

Organizations/Information

American Diabetes Association
1701 North Beauregard Street
Alexandria, VA 22311
Phone: 800-DIABETES (800-342-2383)
http://www.diabetes.org

Directory of Diabetes Organizations
National Diabetes Information Clearinghouse
http://diabetes.niddk.nih.gov/resources/organizations.htm

National Diabetes Information Clearinghouse
1 Information Way
Bethesda, MD 20892-3560
Phone: 800-860-8747
http://diabetes.niddk.nih.gov

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Digestive Diseases

Organizations/Information

Directory of Digestive Diseases Organizations for Patients
National Digestive Diseases Information Clearinghouse
http://digestive.niddk.nih.gov/resources/patient.htm

National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Phone: 800-891-5389
http://digestive.niddk.nih.gov/about/contact.htm

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Eye Diseases and Disorders

Organizations/Information

National Eye Institute
Information Office
31 Center Drive MSC 2510
Bethesda, MD 20892-2510
Phone: 301-496-5248
http://www.nei.nih.gov/health

Eye Health Organizations Database
National Eye Institute
http://www.nei.nih.gov/health/resourceSearch.asp

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Fibromyalgia

Organizations/Information

National Fibromyalgia Association
2200 N. Glassell Street, Suite A
Orange, CA 92865
Phone: 714-921-0150
http://www.fmaware.org

National Institute of Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484 or 877-22-NIAMS (877-226-4267) (toll-free)
http://www.niams.nih.gov

Publications

Questions and Answers About Fibromyalgia
National Institute of Arthritis and Musculoskeletal and Skin Disease, 2004
http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp

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Heart Disease

Organizations/Information

American Heart Association
National Center
7272 Greenville Avenue
Dallas, TX 75231
Phone: 800-AHA-USA1 (800-242-8721)
http://www.heart.org/HEARTORG/

Heart and Vascular Diseases
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/health/public/heart/index.htm

Heart Health & Stroke
National Women's Health Information Center
http://www.womenshealth.gov/heart-stroke/

Heart Health Online
Food and Drug Administration
http://www.fda.gov/hearthealth

National Heart, Lung, and Blood Institute
NHLBI Information Center
Attn: Web Site
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: 301-592-8573
http://www.nhlbi.nih.gov/health/index.htm

Publications

How to Talk to Your Health Care Provider about Heart Disease and Heart Health
National Women's Health Information Center, 2003
http://www.womenshealth.gov/tools/howtotalk.cfm

Communicating with Professionals
American Heart Association, 2011
http://www.heart.org/HEARTORG/conditions/CardiacRehab/Communicating-with-Professionals_UCM_307052_Article.jsp

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High Blood Pressure

Organizations/Information

National Heart, Lung, and Blood Institute
NHLBI Information Center
Attn: Web Site
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: 301-592-8573
http://www.nhlbi.nih.gov/health/index.htm

Publications

Your Guide to Lowering High Blood Pressure
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/hbp/index.html

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HIV/AIDS

Organizations/Information

AIDSinfo
U.S. Department of Health and Human Services
http://www.aidsinfo.nih.gov

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Immunodeficiency Disorders

Publications

Living with Primary Immunodeficiencies, Section 1: What Happens After the Diagnosis
International Patient Organisation for Patients with Primary Immunodeficiencies, 2004
http://www.ipopi.org/publications/living-with-pid/01.html

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Infectious Diseases

Organizations/Publications

Publications

National Institute of Allergy and Infectious Diseases, National Institutes of Health
http://www3.niaid.nih.gov/PubsOrderForm/default.asp

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Kidney Diseases

Organizations/Information

Directory of Kidney and Urologic Diseases Organizations
National Kidney and Urologic Diseases Information Clearinghouse
http://kidney.niddk.nih.gov/resources/organizations.htm

National Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-891-5390
http://kidney.niddk.nih.gov

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Lung Diseases

Organizations/Information

Lung Diseases Information
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/health/public/lung/index.htm

National Heart, Lung, and Blood Institute
NHLBI Information Center
Attn: Web Site
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: 301-592-8573
http://www.nhlbi.nih.gov/health/index.htm

Return to Specific Diseases and Conditions

Mental Health

Organizations/Information

Health Information
National Institute of Mental Health
http://www.nimh.nih.gov/health/index.shtml

Mental Health America!
2001 Beauregard Street, 12th Floor
Alexandria, VA 22311
Phone: 800-969-NMHA (800-969-6642)
http://www.mentalhealthamerica.org

Publications

Dialogue for Recovery: "After a Diagnosis"
Mental Health America!
http://www.mentalhealthamerica.net/go/dialogue-for-recovery

Support

Getting Help: Locate Services
National Institute of Mental Health
http://www.nimh.nih.gov/health/topics/getting-help-locate-services/index.shtml

Return to Specific Diseases and Conditions

Multiple Sclerosis

Organizations/Information

National Multiple Sclerosis Society
733 Third Avenue
New York, NY 10017
Phone: 800-Fight-MS (800-344-4867)
http://www.nmss.org

Publications

Living with MS: For People Newly Diagnosed
National Multiple Sclerosis Society, 2004
http://nationalmssociety.org/about-multiple-sclerosis/newly-diagnosed/index.aspx

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Muscular Dystrophy

Organizations/Information

Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ 85718-3208
Phone: 800-572-1717
http://www.mdausa.org

National Institute of Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484 or 877-22-NIAMS (877-226-4267) (toll-free)
http://www.niams.nih.gov

NINDS Muscular Dystrophy Information Page
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/disorders/md/md.htm

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Neurologic Disorders

Organizations/Information

National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/disorders/disorder_index.htm

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Obesity

Organizations/Information

Aim for a Healthy Weight
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/health/public/heart/obesity/lose_wt/patmats.htm

BMI—Body Mass Index: Introduction
Centers for Disease Control and Prevention
http://www.cdc.gov/nccdphp/dnpa/bmi/index.htm

National Heart, Lung, and Blood Institute
NHLBI Information Center
Attn: Web Site
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: 301-592-8573
http://www.nhlbi.nih.gov/health/index.htm

Weight-control Information Network (WIN)
National Institute of Diabetes and Digestive and Kidney Diseases
http://win.niddk.nih.gov/publications/index.htm

Support

Overeaters Anonymous
World Service Office
P.O. Box 44020
Rio Rancho, NM 87174-4020
Phone: 505-891-2664
Email: info@oa.org
http://www.overeatersanonymous.org

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Parkinson's Disease

Organizations/Information

National Parkinson Foundation, Inc.
1501 NW 9th Avenue
Bob Hope Road
Miami, FL 33136-1494
Phone: 800-327-4545
http://www.parkinson.org

Publications

Living Well
National Parkinson Foundation, Inc.
http://www.parkinson.org/Parkinson-s-Disease/Living-Well

What do the Newly Diagnosed Need to Know (video)
National Parkinson Foundation, Inc.
http://www.parkinson.org/Video-Library/What-do-the-Newly-Diagnosed-Need-to-Know-

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Rare Diseases and Disorders

Organizations/Information

Office of Rare Diseases Research
National Institutes of Health
http://rarediseases.info.nih.gov/Default.aspx

National Organization for Rare Disorders
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
Phone: 800-999-6673 (voicemail only)
http://www.rarediseases.org

Toll-Free Numbers for Health Information
National Health Information Center
http://www.health.gov/nhic/pubs/2005tollfreenumbers/2005toll freenumbers4.htm#RARE

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Skin Diseases

Organizations/Information

National Institute of Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484 or 877-22-NIAMS (877-226-4267) (toll-free)
http://www.niams.nih.gov/Health_Info/defauslt.asp

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Sleep Disorders

Organizations/Information

National Heart, Lung, and Blood Institute
NHLBI Information Center
Attn: Web Site
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: 301-592-8573
http://www.nhlbi.nih.gov/health/index.htm

Sleep Disorders Information
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov/health/public/sleep/index.htm

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Stroke

Organizations/Information

National Stroke Association
9707 E. Easter Lane
Englewood, CO 80112
Phone: 800-787-6537
http://www.stroke.org

NINDS Stroke Information Page
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/disorders/stroke/stroke.htm

Support

Life After Stroke-Stroke Support Groups: Find a Support Group Near You
American Stroke Association (affiliated with the American Heart Association)
Phone: 888-4-STROKE (888-478-7653)
http://strokegroup.americanheart.org/strokegroup/public/zipfinder.jsp

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Urologic Diseases

Organizations/Information

Directory of Kidney and Urologic Diseases Organizations
National Kidney and Urologic Diseases Information Clearinghouse
http://kidney.niddk.nih.govresources/organizations.htm

National Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda, MD 20892-3580
Phone: 800-891-5390
http://kidney.niddk.nih.gov

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Health Care Quality and Safety

Consumer Publications from AHRQ

The following publications are part of AHRQ's health care quality materials, which include Spanish translations:

20 Tips to Help Prevent Medical Errors—Practical tips and questions to ask
Go to: http://www.ahrq.gov/consumer/20tips.htm
AHRQ Pub. No. 00-P038

Five Steps to Safer Health Care—Shorter version of 20 Tips
Go to: http://www.ahrq.gov/consumer/5steps.htm
AHRQ Pub. No. 04-M005 (Feb. 2004)

Taking Care of Myself: A Guide for When I Leave the Hospital
Go to: http://www.ahrq.gov/qual/goinghomeguide.htm

Questions Are the Answer
Go to: http://www.ahrq.gov/questionsaretheanswer/
Select from topics:

  • Talking with Your Clinician.
  • Getting Medical Tests.
  • Planning for Surgery.
  • Getting a Prescription.
  • Build Your Question List.
  • Resources.
  • Glossary.

To Order AHRQ Publications:

For print copies, contact the AHRQ Publications Clearinghouse at 800-358-9295.

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Next Steps After Your Diagnosis: Finding Information and Support includes selected organizations and other resources that provide information and support to people with a wide range of diseases and disorders. The listings are not intended to be comprehensive. Nor does inclusion of any particular resource, outside of those sponsored by the Federal Government, imply endorsement by AHRQ or the Department of Health and Human Services. AHRQ advises that no information from any resource in this document should take the place of medical advice from your doctor.
Page last reviewed October 2012
Internet Citation: Where to Find More Information (cont.): Next Steps After Your Diagnosis. October 2012. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/patients-consumers/diagnosis-treatment/diagnosis/diaginfo/diaginf8.html