Patient Advocacy Numbers - Archived from Johns Hopkins 2/5/03

For broken links:  see the Archive of this page at

  http://web.archive.org/web/20030205012931/http://infonet.welch.jhu.edu/advocacy.html

Advocacy

201-625-7101 American Self-Help Clearinghouse

800-846-7444 Center for Patient Advocacy

800-48-FRIEND The Friends' Health Connection

407-253-9048 Med Help International

800-440-6877 California Nurses Association

888-460-4673 Patient Advocates of Texas

888-CAL-COUNCIL California Consumer Health Care Council

Adoption

800-TOADOPT National Adoption Center

Aging

800-424-3410 American Association of Retired Persons

850-216-2727 Coaliiton to Protect America's Elders

800-677-1116 Elder Care Locator Service

800-638-6833 Medicare Telephone Hotline

800-222-3937 National Eye Care Project

800-222-2225 National Institute on Aging Information Center

800-223-9994 National Osteoporosis Foundation

800-772-1213 Social Security Administration

AIDS

800-458-5231 x2038 CDC National AIDS Clearinghouse

800-342-AIDS National AIDS Hotline

800-669-0696 AIDS Education at Work

800-673-8538 National Association of People with AIDS
###-###-#### Computerized AIDS Ministries

Air Medical Transportation

800-296-1191 Mercy Medical Airlift

800-296-1217 National Patient Air Transport Helpline

703-361-1792 Children's Air Transport for Life

Alcohol

800-622-2255 National Council on Alcoholism

800-344-2666 Al-Anon, Alateen Family Group Hotline

800-527-5344 American Council on Alcoholism

800-729-6686 National Clearinghouse for Alcohol and Drug Information

Allergy

800-822-2762 American Academy of Allergy Asthma & Immunology

800-727-8462 Asthma and Allergy Foundation of America

Alzheimer's

800-272-3900 Alzheimer's Association

800-438-4380 Alzheimer's Disease Education and Referral Center

800-477-2243 French Foundation for Alzheimer's Research

Amyotrophic Lateral Sclerosis (ALS)

800-782-4747 Amyotrophic Lateral Sclerosis Association

Anorexia/Bulimia

???-???-???? Bulimia Anorexia Self-Help

???-???-???? Eating Disorders Helpline Unit

847-831-3438 National Association of Anorexia Nervosa & Associated Disorders

Arthritis

800-283-7800 Arthritis Foundation

800-327-3027 Arthritis Consulting Services

614-881-5601 The Road Back Foundation

Asthma

800-822-2762 American Academy of Allergy Asthma & Immunology

800-LUNG-USA American Lung Association

800-727-8462 Asthma and Allergy Foundation of America

Ataxia

800-5-HELP-AT Ataxia Telangiectasia Childrens Project
612-473-7666 National Ataxia Foundation

Attention Deficit Disorder

800-223-4050 Children and Adults with Attention Deficit Disorder (CH.A.D.D.)

Autoimmune Diseases see Immune Deficiencies

Back Pain

800-247-2225 Back Pain Hotline

Behcet's Disease

800-7BEHCETS American Behcet's Disease Association

Biliary Atresia

718-987-6200 Biliary Atresia and Liver Transplant Network

Birth Defects

888-663-4637 March of Dimes Birth Defects Foundation

800-221-6827 National Easter Seal Society

Blind/Vision Impaired

800-683-5555 Foundation Fighting Blindness

800-424-8666 National Alliance of Blind Students

800-232-5463 American Foundation for the Blind

800-562-6265 National Association of Parents of Visually Impaired

800-334-5497 National Center for Vision and Aging

800-548-4337 Guide Dog Foundation for the Blind

800-424-8567 National Library Services for the Blind and Physically Handicapped

Brain Aneurysms

617-723-3870 Brain Aneurysm Foundation

Brain Tumors

800-886-2282 American Brain Tumor Association

800-934-CURE National Brain Tumor Foundation

Breast Cancer see also cancer

412-422-BCIS Breast Cancer Information Service

410-955-4851 Johns Hopkins Breast Center

###-###-#### Breast Cancer Survivor's Quality of Care Survey

###-###-#### Breast Cancer Awareness & Solutions Network

###-###-#### BreastCancer.net

212-719-0154 National Alliance of Breast Cancer Organizations (NABCO)

202-296-7477 National Breast Cancer Coalition

212-719-0364 SHARE

800-IM-AWARE The Susan G. Komen Breast Cancer Foundation

800-221-2141 Y-ME Breast Cancer Organization (24 hrs: 312-986-8228)

Breastfeeding

800-LA-LECHE La Leche League International

Burn Injuries

800-888-BURN The Phoenix Society

Cancer see also breast cancer, lung cancer, cervical cancer

510-204-4286 Alta Bates-Herrick Breast Cancer Risk Counseling

800-525-3777 AMC Information and Counseling Line

800-ACS-2345 American Cancer Society

###-###-#### American Society of Clinical Oncology

800-433-0464 Bloch National Cancer Hot Line

800-4-CANCER Cancer Information Service

800-843-8114 American Institute for Cancer Research

301-984-9496 The Association of Community Cancer Centers

###-###-#### Cancer Discussion List Archives

800-813-HOPE Cancer Care

###-###-#### Cancer News on the Net

800-366-2223 Candelighters Childhood Cancer Foundation

800-55-CHEMO CHEMOcare

800-ICARE-61 The International Cancer Alliance, Inc.

800-452-CURE International Myeloma Foundation

800-955-4787 Lower Eastern Shore (Del-Mar-Va) Cancer Support Group

###-###-#### Myeloproliferative Disorders List Archives

800-4-CANCER National Cancer Institute

301-650-8868 National Coalition for Cancer Survivorship

301-496-7403 NCI's CancerFax
616-453-1477 Patient Advocates for Advanced Cancer Treatment

800-808-7866 US TOO International (Prostate Cancer/BPH)

818-508-5657 Vital Options

671-354-9888 Women's Community Cancer Project

Cerebral Palsy

800-872-5827 United Cerebral Palsy Associations

Cervical Cancer

800-685-5531 National Cervical Cancer Coalition (NCCC)

Children

800-433-9016 American Academy of Pediatrics

800-422-4453 Child Help USA

800-787-KIDS Children's Rights Council

888-835-5669 Family Voices

800-872-5437 Missing Children Help Center

800-843-5678 National Center for Missing and Exploited Children

800-394-3366 National Clearinghouse on Child Abuse & Neglect

800-695-0285 National Information Center for Children and Youth with Disabilities

800-422-4453 National Child Abuse Hotline

800-892-5437 Kidsrights

800-222-2000 National Council on Child Abuse and Family Violence

847-256-8525 Child and Adolescent Bipolar Foundation

Chronic Fatigue Syndrome

800-442-3437 CFIDS

###-###-#### CFIDS/M.E. Information Page

###-###-#### Medical Professionals/Persons with CFIDS, Inc. (MPWC)

###-###-#### Medical Professionals With CFIDS

Chronic Illness

800-838-0879 Well Spouse Foundation

888-751-REST Rest Ministries, Inc.

Chronic Pain

###-###-#### American Pain Foundation

800-616-PAIN North American Chronic Pain Association of Canada

916-632-0922 American Chronic Pain Association

888-751-REST Rest Ministries, Inc.

Cleft Palate

800-242-5338 National Cleft Palate Association

Cocaine

800-262-2463 National Cocaine Hotline

800-347-8998 Cocaine Anonymous

Crohn's/Colitis

800-343-3637 Crohn's and Colitis Foundation of America

Creutzfeldt-Jakob Disease

###-###-#### CJD Voice

###-###-#### CJD Watch

###-###-#### Blood Recall/Withdrawal -CJD

###-###-#### The Many Faces of CJD

Cystic Fibrosis

800-344-4823 Cystic Fibrosis Foundation

Depression see also schizophrenia, mental health

800-826-3632 National Depressive & Manic-Depressive Association (DMDA)

212-241-8924 DMDA of Mount Sinai, NY

800-248-4344 National Foundation for Depressive Illness

410-955-4647 Depression and Related Affective Disorders Association

516-829-0091 National Alliance for Research on Schizophrenia and Depression

212-533-6374 Mood Disorders Support Group/NY

800-789-CMHS National Mental Health Services Knowledge Exchange Network

Diabetes

800-338-DMED American Association of Diabetes Educators

800-DIABETES American Diabetes Association

800-232-3472 American Diabetes Foundation

###-###-#### Diabetes Insipidus Foundation, Inc.

800-223-1138 Juvenile Diabetes Foundation

###-###-#### Johns Hopkins Diabetes Center

Disabilities

407-880-9232 American Association of Disabled Persons

888-835-5669 Family Voices

800-962-9629 National Spinal Cord Injury Association

800-526-3456 National Spinal Cord Injury Hotline

800-248-2253 National Organization on Disability

800-346-2742 National Rehabilitation Information Center

800-922-9234 National Information Clearinghouse for Infants with Disablilties

Disabilities and Life-Threatening Conditions

800-835-1043 Institute of Logopedics

800-344-5405 ABLEDATA

800-333-6293 National Center for Youth with Disabilities

800-426-2133 National Support Center for Persons with Disabilities

Disease Control

800-810-4000 Compliance Control Center

Divorce

800-733-DADS National Congress for Men and Children
800-457-6962 Mothers without Custody
800-637-7974 Parents without Partners

Down Syndrome

800-221-4602 National Down Syndrome Society

800-232-6372 National Down Syndrome Congress

###-###-#### Down Syndrome Online Advocacy Group

216-621-5858 The Baker Center

Drug Abuse

800-729-6686 National Clearinghouse for Alcohol and Drug Information

800-666-3332 Office of National Drug Control Policy Clearinghouse on Drugs & Crime

800-662-4357 CSAT's National Drug and Alcohol Treatment Routing Service

800-667-7433 National Parents' Resource Institute for Drug Education

800-258-2766 Just Say No International

Ehlers-Danlos Syndrome

213-651-3038 Ehlers-Danlos National Foundation

Emphysema

800-586-4872 American Lung Association

###-###-#### National Emphysema Foundation

888-996-COPD Emphysema Foundation For Our Right To Survive

Encephalitis

408-298-2060 National Encephalitis Foundation

Endometriosis

800-992-3636 Endometriosis Association

800-239-7280 Endometriosis Research Center

###-###-#### Endometriosis Action Group

Eosinophilic Fasciitis (Shulman's Syndrome)

###-###-#### Eosinophilic Fasciitis Home Page

Epilepsy

800-332-1000 Epilepsy Foundation of America

800-642-0500 Epilepsy Information Service

Fibromyalgia

714-921-0150 National Fibromyalgia Awareness Campaign

Glaucoma

800-826-6693 Glaucoma Research Foundation

Guillain-Barré Syndrome

610-667-0131 Guillain-Barré Syndrome Foundation International

###-###-#### J. Steinhilber's Guillain-Barré Syndrome Page

Gulf War Syndrome

202-628-2700 x162 National Gulf War Resource Center, Inc.

Head/Brain Injury

703-236-6000 Brain Injury Association

905-641-8877 Ontario Brain Injury Association

914-883-6532 Forget-Me-Not

206-621-8558 Head Injury Hotline

Headache

800-255-ACHE American Council for Headache Education

800-843-2256 National Headache Foundation

800-245-0088 New England Headache Treatment Program

Health Information

800-336-4797 National Health Information Center (U.S. DHHS)

Hearing/Communication Handicaps

800-327-9355 Better Hearing Institute

800-638-8255 American Speech Language Hearing Association

800-535-3323 Deafness Research Foundation

800-521-5247 Hearing Aid Helpline

800-241-1044 800-241-1055 (TTY)

National Institute on Deafness and Other Communication Disorders [NIDCD] Clearinghouse

Heart Disease

800-242-8721 American Heart Association

Hemolytic Uremic Syndrome

516-673-3017 Lois Joy Galler Foundation

Hemophilia

800-424-2634 National Hemophilia Foundation

Hepatitis

800-223-0179 American Liver Foundation Hepatitis Foundation

800-891-0707 Hepatitis Foundation International

###-###-#### HEPV-L FAQ

215-884-8786 Hepatitis B Foundation

800-324-7305 Hepatitis C Foundation

612-647-9009 Hepatitis B Coalition

###-###-#### Hepatitis Information Network

Hereditary Hemorrhagic Telangiectasia

800-448-6389 HHT Foundation

Hospice Care

616-866-9127 Hospice Patients Alliance, Inc

Huntington's Disease

800-345-4372 Huntington's Disease Society

Immune Deficiencies

800-296-4433 Immune Deficiency Foundation

800-598-4668 American Autoimmune Related Diseases Association

Impotence

800-835-7667 Recovery of Male Potency

800-843-4315 Impotence Information Center

800-669-1603 Impotence Institute of America
800-867-7042 Impotency Information sponsored by Pharmacia & Upjohn, Inc.

Incontinence

800-237-4666 Simon Foundation

800-252-3337 National Association For Continence

Interstitial Cystitis

301-610-5308Interstitial Cystitis Association

Kidney Disease/Failure

800-749-2257 American Association of Kidney Patients

626-917-9803 American Coalition of Kidney Patients, Inc.

800-638-8299 American Kidney Fund

800-622-9010 National Kidney Foundation

Liver Disease see also hepatitis

800-GO LIVER American Liver Foundation

718-987-6200 Biliary Atresia and Liver Transplant Network

800-563-5483 Canadian Liver Foundation

Lung Cancer see also cancer

800-298-2436 Alliance for Lung Cancer Advocacy Support and Education (ALCASE)

800-LUNG-USA American Lung Association

Lung Diseases see also emphysema

800-LUNG-USA American Lung Association

206-781-5680 Pulmonary Fibrosis Association

800-748-72PH Pulmonary Hypertension Association

###-###-#### PHCentral

Lupus

800-558-0121 Lupus Foundation

800-558-0121 American Lupus Society

727-821-7489 Lupus Foundation of America, Inc., Greater FL Chapter

Lymphedema Network

800-541-3259 National Lymphedema Network

Marfan Synfrome

800-8MARFAN National Marfan Foundation

905-826-3223 Canadian Marfan Association

Medical Transport

800-296-1217 National Patient Air Transport Hotline

Mental Health see also depression, schizophrenia

800-447-4474 Mental Health InfoSource

207-799-6750 Creative Health Foundation

800-950-NAMI National Alliance for the Mentally Ill

800-969-6642 National Mental Health Association

800-789-CMHS National Mental Health Services Knowledge Exchange Network

Mental Retardation

817-261-6003 The Arc of the United States

Moebius Syndrome

914-834-2933 Moebius Syndrome Foundation

Multiple Sclerosis

800-441-7055 Multiple Sclerosis Foundation, Inc.

800-FIGHT-MS National Multiple Sclerosis Society

Muscular Dystrophy

800-572-1717 Muscular Dystrophy Association

Myasthenia Gravis Foundation

800-541-5454 Myasthenia Gravis Foundation

Narcolepsy

800-829-1933 Narcolepsy & Sleep Disorders

513-891-3522 Narcolepsy Network, Inc.

612-721-6321 YAWN - Young Americans With Narcolepsy

954-452-2030 Sleep Disorders Movements, Inc.

Organ Transplantation

818-781-1006 American Share Foundation

888-222-2690 Second Wind Lung Transplant Association

800-TRIO-386 Transplant Recipients International Organization, INC.

718-597-5619 Manhattan Chapter

718-987-6200 Biliary Atresia and Liver Transplant Network

800-528-2971 The Living Bank

Ostomy

800-826-0826 United Ostomy Association

Paralysis

800-225-0292 American Paralysis Association

800-962-9629 National Spinal Cord Injury Association

800-526-3456 National Spinal Cord Injury Hotline

Parkinson's Disease

800-233-2732 American Parkinson Disease Association
800-327-4545 National Parkinson Foundation
800-344-7872 Parkinson's Educational Program

Patients' Rights

781-769-5720 New England Patients' Rights Group, Inc.

Personal Hygiene

800-810-4000 Compliance Control Center

Pituitary Diseases

800-642-9211 Pituitary Tumor Network Association

Poison/Pollutants

Polio

314-534-0475 International Polio Network

Porphyria

713-266-9617 American Porphyria Foundation

Premenstrual Syndrome

800-222-4767 PMS Access

Prenatal Care

800-504-7081 National Hispanic Prenatal Hotline

800-673-8444 Healthy Mothers, Healthy Babies Coalition

800-433-5523 Be Healthy, Inc.

Progressive Supranuclear Palsy

800-457-4777 Society for Progressive Supranuclear Palsy

Prostatitis

309-664-6222 Prostatitis Foundation

Psoriasis

800-723-9166 National Psoriasis Foundation

Rare Diseases

800-999-6673National Organization for Rare Disorders

Reflex Sympathetic Dystrophy Syndrome (causalgia)

###-###-#### Reflex Sympathetic Dystrophy Syndrome Association of America

Schizophrenia see also depression, mental health

800-847-3802 American Schizophrenia Association

516-829-0091 National Alliance for Research on Schizophrenia and Depression

847-256-8525 Child and Adolescent Bipolar Foundation

Scleroderma

800-422-1113 Scleroderma Federation

800-722-4673 United Scleroderma Foundation

301-782-4979 Southern Maryland Chapter

800-441-CURE Scleroderma Research Foundation

Scoliosis

800-673-6922 National Scoliosis Foundation, Inc.

Sexually Transmitted Diseases

800-227-8922 National STD Hotline

Sickle Cell

800-421-8453 National Association for Sickle Cell Disease, Inc.

Social Work

800-638-8799 National Association of Social Workers

Spina Bifida

800-621-3141 Spina Bifida Association

Spinal Cord Injuries

800-962-9629 National Spinal Cord Injury Association

708-352-6223 Illinois Chapter

800-526-3456 National Spinal Cord Injury Hotline

Spinal Muscular Atrophy

800-886-1762 Families of Spinal Muscular Atrophy

Stroke

800-553-6321 Courage Stroke Network

800-787-6537 National Stroke Association

Stuttering

800-221-2483 National Center for Stuttering

Terminal Illness

800-989-WILL Choice in Dying

800-854-3402 Hospice Foundation of America

800-331-1620 Hospicelink

800-658-8898 National Hospice Organization

800-741-9465 National Viatical Association

Thalassemia

800-522-7222 Thalassemia Action Group

Thyroid Disease

888-996-4460 American Foundation of Thyroid Patients

800-832-8321 Thyroid Foundation of America, Inc.

888-595-2131 The Kelly G. Ripken Program

Tourette Syndrome

800-237-0717 Tourette Syndrome Association

Wilson's Disease

800-399-0266 Wilson's Diesease Association

Women's Health

310-410-9886 Findings: The Women's Health Care Advocacy Service

202-628-7814 National Women's Health Network

800-354-8824 National Women's Resource Center

Xeroderma Pigmentosum

518-851-2612 Xeroderma Pigmentosum Society, Inc.