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
E-mail: 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 (PDF file)
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
Return to Specific Diseases and Conditions
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
Return to Specific Diseases and Conditions
Neurologic Disorders
Organizations/Information
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/disorders/disorder_index.htm
Return to Specific Diseases and Conditions
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
E-mail: info@oa.org
http://www.overeatersanonymous.org
Return to Specific Diseases and Conditions
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-
Return to Specific Diseases and Conditions
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
Return to Specific Diseases and Conditions
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
Return to Specific Diseases and Conditions
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
Return to Specific Diseases and Conditions
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
Return to Specific Diseases and Conditions
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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Top of Page 
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)
Quick Checks for Quality—Checklist to use when choosing health plans,
doctors, treatments, hospitals, and long-term care
Go to:
http://www.ahrq.gov/consumer/quick.htm
AHRQ Pub. No. 99-R027
Taking Care of Myself: A Guide for When I Leave the Hospital
Go to: http://www.ahrq.gov/qual/goinghomeguide.htm
AHRQ Pub. No. 10-0059-C (April 2010)
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.
Top of Page
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. |
AHRQ Publication No. 05-0049
Current as of July 2005
"More Information" Resources Updated January 2012
Previous Section
Contents
Internet Citation:
Next Steps After Your Diagnosis: Finding Information and Support. Agency for Healthcare Research and Quality, Rockville, MD. AHRQ Publication No. 05-0049, July 2005. http://www.ahrq.gov/consumer/diaginfo.htm
540 Gaither Road Rockville, MD 20850 