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Tele-Well℠ Advisory

Patient Advocacy

Division of Revenue Objectives Int'l., LLC

 

Patient Advocacy Advisors Providing Custom, Exclusive, Advanced Telemedical Plans Integrating

Consult, Diagnosis, Treatment, Pharmacy and On-Going Medical/Health/Electronic Medical Record (EMR) Management as well as Wellness Monitoring 24/7, Critical Illness Second Opinion Services, Discount Drugs and Lab Tests.

 
 This resource guide has been created to assist consumers in becoming advocates for their own health. The world of medicine is undergoing incredible changes in methods of treatment as well as the process by which care is delivered to the consumer. Becoming informed and working as a partner with health care providers helps to insure that the best possible treatment and outcome will be achieved.

Revenue Objectives Int'l., LLC makes no recommendations for these products or services nor endorses them.

 

Click Here for Patient Advocate Foundation 

  Patient Advocacy Numbers by Disease 

Archived from Johns Hopkins 2/5/11


  
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.
                                               
 
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