APPENDIX A
CAREGIVER ADVOCACY GROUPS /
RESOURCE CENTERS
APPENDIX B
ADVOCACY GROUPS BY DISEASE
APPENDIX C
FINANCIAL ASSISTANCE
APPENDIX D
RESPITE CARE / VOLUNTEER SERVICES
APPENDIX E
TRANSPORTATION
APPENDIX F
HOSPICE / HOME CARE / END OF LIFE
APPENDIX G
CAREGIVER WEBSITES
APPENDIX H
CAREGIVER BOOKS / GUIDES

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A PP E N DI X A : C A R E GI V E R A D V O C AC Y G R O U P S / RE S O U R C E C E N T E R S
National Caregiving Foundation
801 North Pitt Street, #116
Alexandria, VA 22314
(800) 930-1357
(703) 299-9300
www.caregivingfoundation.org
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Caregiver Resource Center
Kensington, MD 20895
Mount Sinai Medical Center
(800) 896-3650
1425 Madison Avenue
(301) 942-6430
East Building, Room L-4-89 (4th Floor)
www.nfcacares.org
New York, NY 10029
(212) 659-8989
Rainbows
2100 Golf Road, #370
Family Caregiver Alliance
Rolling Meadows, IL 60008
690 Market Street, Suite 600
(800) 266-3206
San Francisco, CA 94104
(847) 952-1770
(800) 445-8106
www.rainbows.org
(415) 434-3388
www.caregiver.org
Rosalynn Carter Institute of Georgia Southwestern
College
Friend's Health Connection
800 Wheatley Street
P.O. Box 114
Americus, GA 31709
New Brunswick, NJ 08903
(912) 928-1234
(800) 48-FRIEND (483-7436)
rci.gsw.edu
(732) 418-1811
www.48friend.org
The Compassionate Friends, Inc.
P.O. Box 3696
Caregivers Service
Oak Brook, IL 60522-3696
Health Outreach Office
(630) 990-0010
New York Presbyterian Hospital
www.compassionatefriends.org
525 East 68th Street, Box 143
New York, NY 10131
Well Spouse Foundation
(212) 746-4365
30 East 40th Street, PH
New York, NY 10016
National Alliance for Caregiving
(800) 838-0879
4720 Montgomery Lane, Suite 642
(212) 685-8815
Bethesda, MD 20814-3425
www.wellspouse.org
(301) 718-8444
www.caregiving.org
To locate caregiver groups in your area, you can contact
specific organizations listed by disease in Appendix B or
ask a social worker.
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A P P E N D I X B : A D V O C A C Y G R O U P S B Y D I S E A S E
ALZHEIMER'S DISEASE
Alzheimer's Association
919 North Michigan Avenue, Suite 1100
Chicago, IL 60611
(800) 272-3900
(312) 335-8700
AIDS/HIV
www.alz.org
American Foundation for AIDS Research
Alzheimer's Disease Education and Referral Service
120 Wall Street, 13th Floor
The ADEAR Center
New York, NY 10005
P.O. Box 8250
(800) 39-amfAR (392-6327)
Silver Spring, MD 20907
(212) 806-1600
(800) 438-4380
www.amfar.org
(301) 495-3311
www.alzheimers.org
HIV/AIDS Treatment Information Service
ARTHRITIS
P.O. Box 6303
Rockville, MD 20849
Arthritis Foundation
(800) HIV-0440 (448-0440)
1650 Bluegrass Lakes Parkway
(301) 738-6616
Alpharetta, GA 30004
www.hivatis.org
(800) 283-7800
www.arthritis.org
Centers for Disease Control and Prevention
National HIV/AIDS Hotline
AMYOTROPHIC LATERAL SCLEROSIS
(800) 342-AIDS
The Amyotrophic Lateral Sclerosis Association
(800) 344-SIDA (Spanish)
The ALS Association National Office
(800) AIDS-889 (for the deaf/hearing-impaired)
27001 Agoura Road, Suite 150
www.cdc.gov
Calabasas Hills, CA 91301
Gay Men's Health Crisis
(800) 782-4747
119 West 24th Street
(818) 880-9007
New York, NY 10011
www.alsa.org
(800) AIDS-NYC (243-7692)
BRAIN INJURY
(212) 807-6655
(212) 645-7470 (for the deaf/hearing-impaired)
Brain Injury Association
www.gmhc.org
105 North Alfred Street
Alexandria, VA 22314
National Association of People with AIDS
(800) 444-6443
1413 K Street, NW, 7th Floor
(800) 228-8201 (within NY)
Washington, DC 20005
www.neurolaw.com
(202) 898-0414
www.bianys.org
www.napwa.org
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CANCER
DIABETES
American Cancer Society
American Diabetes Association
1599 Clifton Road
1701 North Beauregard Street
Atlanta, GA 30329
Alexandria, VA 22311
(800) ACS-2345 (227-2345)
(800) DIABETES (342-2383)
www.cancer.org
(703) 549-1500
www.diabetes.org
National Cancer Institute
Cancer Information Service
EPILEPSY
Building 31, Room 10A07
Epilepsy Foundation of America
31 Center Drive MSC 2580
4351 Garden City Drive
Bethesda, MD 20892
Landover, MD 20785
(800) 4-CANCER (422-6237)
(800) EFA-1000 (332-1000)
www.cancer.gov
(301) 459-3700
Cancer Care, Inc.
www.efa.org
275 Seventh Avenue
HEART DISEASE AND STROKE
New York, NY 10001
(800) 813-HOPE (outside the tri-state area)
American Heart/Stroke Association
(212) 302-2400
7272 Greenville Avenue
www.cancercareinc.org
Dallas, TX 75231
(800) AHA-USA1 (242-8721) (Heart and Stroke
CEREBRAL PALSY
Information)
United Cerebral Palsy Association
(888) 4-STROKE (Stroke Information)
1600 L Street, NW, Suite 700
(888) MY HEART (Women's Health Information)
Washington, DC 20036
www.americanheart.org
(800) USA-5-UCP (872-5827)
www.strokeassociation.org
(202) 776-0406
National Stroke Association
www.ucpa.org
96 Inverness Drive East, Suite I
CHRONIC OBSTRUCTIVE PULMONARY
Englewood, CO, 80112
DISEASE
(800) 787-6537
(303) 649-9299
American Lung Association
www.stroke.org
1740 Broadway
New York, NY 10019
(800) 586-4872
(212) 315-8700
www.lungusa.org
CYSTIC FIBROSIS
Cystic Fibrosis Foundation
6931 Arlington Road, Suite 200
Bethesda, MD 20814
(800) FIGHT CF (344-4823)
(301) 951-4422
www.cff.org
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KIDNEY DISEASE
National Depressive and Manic Depressive
Association
American Association of Kidney Patients
730 Franklin Street, Suite 501
100 South Ashley Drive, Suite 280
Chicago, IL 60610
Tampa, FL 33602
(800) 82-NDMDA (826-3632)
(800) 749-2257
(312) 642-0049
www.aakp.org
www.ndmda.org
American Kidney Fund
6110 Executive Boulevard, Suite 1010
National Institute of Mental Health
Rockville, MD 20852
NIMH Public Inquiries
(800) 638-8299
6001 Executive Boulevard, Rm. 8184, MSC 9663
(301) 881-3052
Bethesda, MD 20892
www.akfinc.org
(800) 421-4211
(301) 443-4513
The National Kidney Foundation
www.nimh.nih.gov
30 East 33rd Street, Suite 1100
New York, NY 10016
National Mental Health Association
(800) 622-9010
(212) 889-2210
1021 Prince Street
www.kidney.org
Alexandria, VA 22314
(800) 969-NMHA (6642)
LIVER DISEASE
(703) 684-7722
American Liver Foundation
www.nmha.org
75 Maiden Lane, Suite 603
MULTIPLE SCLEROSIS
New York, NY 10038
(800) GO LIVER (465-4837)
The National Multiple Sclerosis Society
www.liverfoundation.org
733 Third Avenue
MENTAL ILLNESS
New York, NY 10017
(800) FIGHT-MS (344-4867)
American Psychiatric Association
www.nmss.org
1400 K Street, NW
www.msnyc.org
Washington, DC 20005
(202) 682-6000
PAIN
www.psych.org
American Chronic Pain Association
American Psychological Association
P.O. Box 850
750 First Street, NE
Rocklin, CA 95677
Washington, DC 20002-4242
(916) 632-0922
(800) 374-2721
www.theacpa.org
(202) 336-5500
www.apa.org
American Pain Foundation
National Alliance for the Mentally Ill
111 South Calvert Street, Suite 2700
Colonial Place Three
Baltimore, MD 21202
2107 Wilson Blvd., Suite 300
www.painfoundation.org
Arlington, VA 22201
(800) 950-NAMI (6264)
(703) 524-7600
www.nami.org
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PARALYSIS
RARE DISORDERS
Christopher Reeve Paralysis Foundation
National Organization for Rare Disorders (NORD)
500 Morris Avenue
P.O. Box 8923
Springfield, NJ 07081
New Fairfield, CT 06812
(800) 225-0292
(800) 999-NORD (6673)
www.paralysis.org
(203) 746-6518
www.rarediseases.org
Kent Waldrep National Paralysis Foundation
SICKLE CELL DISEASE
16415 Addison Road, Suite 550
Addison, TX 75001
Sickle Cell Advocates for Research and
(877) SCI-CURE (724-2873)
Empowerment, Inc.
(972) 248-7100
P.O. Box 630127
www.kwnpf.org
Bronx, NY 10463
(718) 884-9670
National Spinal Cord Injury Hotline
www.defiers.com
2200 Kernan Drive
Baltimore, MD 21207
Sickle Cell Disease Association of America, Inc.
(800) 526-3456
National Headquarters
www.scihotline.org
200 Corporate Pointe, Suite 495
PARKINSON'S DISEASE
Culver City California 90230
(800) 421-8453
The American Parkinson Disease
(310) 216-6363
Association, Inc.
www.sicklecelldisease.org
1250 Hylan Blvd., Suite 4B
VISUAL IMPAIRMENT
Staten Island, NY 10305
(800) 223-2732
American Foundation for the Blind
(718) 981-8001
11 Penn Plaza, Suite 300
www.apdaparkinson.com
New York, NY 10001
(800) AFB Line (232-5463)
National Parkinson Foundation, Inc.
(212) 502-7600
Bob Hope Parkinson Research Center
www.afb.org
1501 N.W. 9th Avenue
Bob Hope Road
The Lighthouse, Inc.
Miami, Florida 33136
111 East 59th Street
(800) 327-4545
New York, NY 10022
(305) 547-6666
(800) 829-0500
www.parkinson.org
(212) 821-9200
(212) 821-9713 (for the deaf/hearing-impaired)
www.lighthouse.org
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A P P E N D I X C : F I N A N C I A L / L E G A L A S S I S T A N C E
FOR HEALTH CARE/MEDICATION
Health Care Financing Administration
7500 Security Boulevard
AIDS Drug Assistance Program
Baltimore, MD 21244
Centers for Disease Control and Prevention
(800) MEDICARE (633-4227)
National HIV/AIDS Hotline
(410) 786-3000
(800) 342-AIDS (342-2437)
www.hcfa.gov (information about health care)
(800) 344-SIDA (Spanish)
www.medicare.gov (Medicare information)
(800) AIDS-889 (for the deaf/hearing-impaired)
- OR -
Hill-Burton Program
Call your state Department of Health:
Health Resources and Services Administration
(518) 459-1641 (New York State Department of
12300 Twinbrook, Suite 5200
Health)
Rockville, MD 20857
(800) 638-0742
American Association of Retired Persons
(301) 443-5656
(AARP)
www.hrsa.dhhs.gov/osp/dfcr
601 E St., NW
Washington, DC 20049
Medicare Rights Center
(800) 424-3410
(800) 333-4114
www.aarp.com
(212) 869-3850 (in New York City)
www.medicarerights.org
American Bar Association
Commission on Legal Problems of the Elderly
The Medicine Program
740 Fifteenth Street, NW, 8th Floor
P. O. Box 515
Washington, DC 20005
Doniphan, MO 63935-0515
(202) 662-1032
(573) 778-1118
www.abanet.org/elderly
www.themedicineprogram.com
FOR PERSONAL FINANCES
American Health Assistance Foundation
15825 Shady Grove Road, Suite 140
Financial Planning Association
Rockville, MD 20850
5775 Glenridge Drive, NE, Suite B-300
(800) 437-2423
Atlanta, GA 30328
(301) 948-3244
(800) 945-IAFP (4237)
www.ahaf.org
(800) 282-7526
(404) 845-0011
Directory of Prescription Drug Patient
www.fpanet.org
Assistance Programs
Pharmaceutical Research and Manufacturers
Social Security Administration
of America (PhRMA)
Toll-free Information Line
1100 Fifteenth Street, NW
(800) 772-1213
Washington, DC 20005
www.ssa.gov
(800) 762-4636
(202) 835-3400
www.phrma.org/patients
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A P P E N D I X D : R E S P I T E C A R E / V O L U N T E E R S E R V I C E S
American Red Cross
Meals On Wheels Association of America
ARC in Greater New York
1414 Prince Street, Suite 202
150 Amsterdam Ave
Alexandria, Virginia 22314
New York, NY 10023
(800) 999-6262
(212) 787-1000
(703) 548-5558
www.nyredcross.org
www.mealsonwheelsassn.org
B'nai B'rith
National Easter Seal Society
1640 Rhode Island Avenue, NW
230 West Monroe Street, Suite 1800
Washington, DC 20036
Chicago, IL 60606
(202) 857-6600
(800) 221-6827
bnaibrith.org
(312) 726-6200
(312) 726-4258 (TTY)
Catholic Charities USA
www.easter-seals.org
1731 King Street, Suite 200
Alexandria, VA 22314
National Federation of Interfaith Volunteer
(703) 549-1390
Caregivers, Inc.
www.catholiccharitiesusa.org
One West Armour Blvd, Suite 202
Kansas City, MO 64111
Eldercare Locator
(800) 350-7438
Administration on Aging
(816) 931-5442
330 Independence Avenue, SW
www.nfivc.org
Washington, DC 20201
(800) 677-1116
National Respite Locator Service
(202) 619-7501
ARCH National Resource Center
www.aoa.gov
Chapel Hill Training-Outreach Project
800 Eastowne Drive, Suite 105
Elderserve
Chapel Hill, NC 27514
The Hebrew Home at Home
(800) 7-RELIEF (773-5433)
3260 Henry Hudson Parkway
www.chtop.com/locator.htm
Riverdale, NY 10463
(800) 567-3646
United Way of America
www.elderserve.org
701 North Fairfax Street
Alexandria, VA 22314
Family Friends (for children with disabilities
(800) 411-8929
or chronic illness)
(703) 836-7112
National Council on Aging
www.unitedway.org
Director of Intergenerational Programs
409 Third Street, SW, Second Floor
Volunteers of America
Washington, DC 20024
1660 Duke Street
(202) 479-6675
Alexandria, VA 22314
(800) 899-0089
(703) 341-5000
www.voa.org
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A P P E N D I X E : T R A N S P O R T A T I O N
Health Care Financing Administration
(to determine coverage for transportation under
Medicaid/Medicare)
7500 Security Boulevard
Baltimore, MD 21244
(800) MEDICARE (633-4227)
(410) 786-3000
www.hcfa.gov
www.medicare.gov (Medicare information)
State/City Departments for the Aging
New York State: 2 Empire State Plaza
Albany, NY 12223
Access-A-Ride
(800) 342-9871 (Senior Citizens' Hot
MTA New York City Transit
Line)
Paratransit Division
www.aging.state.ny.us
Department of Buses
New York City: 2 Lafayette Street
10 Columbus Circle, 17th Floor
New York, NY 10007
New York, NY 10019
(212) 442-1000
(212) 374-5634
www.ci.nyc.ny.us/html/dfta
(877) 337-2017 (reservations, applications, eligi-
bility)
Project Cart (New York City only)
(212) 333-3147 (for the deaf/hearing-impaired)
490 Second Avenue
New York, NY 10016
American Red Cross
(212) 221-3300
ARC in Greater New York
150 Amsterdam Ave
New York, NY 10023
For additional transportation options check with associa-
(212) 787-1000
tions related to specific diseases listed in Appendix B or
www.nyredcross.org
volunteer organizations listed in Appendix D.
Eldercare Locator
Administration on Aging
330 Independence Avenue, SW
Washington, DC 20201
(800) 677-1116
www.aoa.gov
126

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A P P E N D I X F : H O S P I C E / H O M E C A R E / E N D O F L I F E
Hospice Foundation of America
2001 S St., NW #300
Washington, DC 20009
(800) 854-3402
www.hospicefoundation.org
National Association for Home Care
228 Seventh Street, SE
Washington, DC 20003
(202) 547-7424 (home care)
(202) 546-4759 (hospice)
www.nahc.org
American Health Care Association
National Hospice and Palliative Care Organization
1201 L St., NW
1700 Diagonal Road, Suite 300
Washington, DC 20005
Alexandria, VA 22314
(202) 842-4444
(800) 658-8898
www.ahca.org
(703) 243-5900
www.nhpco.org
Americans for Better Care of the Dying
2175 K Street, NW, Suite 820
Visiting Nurse Association of America
Washington, DC 20037
11 Beacon Street, Suite 910
(202) 530-9864
Boston, MA 02108
www.abcd-caring.com
(888) 866-8773
(617) 523-4042
Choice in Dying/Partnership for Caring
www.vnaa.org
1035 30th Street, NW
Washington, DC 20007
(800) 989-WILL (9455)
www.choices.org
www.partnershipforcaring.org
Elderserve
The Hebrew Home at Home
3260 Henry Hudson Parkway
Riverdale, NY 10463
(800) 567-3646
www.elderserve.org
Hospice Education Institute
190 Westbrook Road
Essex, CT 06426
(800) 331-1620 (Hospicelink)
(860) 767-1620
www.hospiceworld.org
127

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A P P E N D I X G : C A R E G I V E R W E B S I T E S
Empowering Caregivers
www.care-givers.com
Familycare America
www.familycareamerica.com
Family Caregivers Alliance
www.caregiver.org
AARP ­ American Association of Retired
Friend's Health Connection
Persons
www.48friend.org
www.aarp.org/caregive/home.html
Healthy Caregiver.com
Caregiver-Information.com
www.healthycaregiver.com
www.caregiver-information.com
National Alliance for Caregivers
Caregiver Network, Inc.
www.caregiving.org
www.caregiver.on.ca
National Family Caregivers Association
Caregiver Survival Resources
www.nfcacares.org
www.caregiver911.com
National Partnership for Women and Families
Caregiver Zone ­ The Site for Caregivers
www.nationalpartnership.org
and Seniors
Resources for Caregivers
caregiverzone.com
www.abs.sdstate.edu/ae/agrability/care/resources.html
Caregivers.com
Rosalynn Carter Institute of Georgia Southwestern
www.caregivers.com
College
Caregiving.com
rci.gsw.edu
www.caregiving.com
The Caregiver Guide ­ Resource Links
Careguide.com
www.rbs4u.com/caregiver/links.htm
www.careguide.com
Today's Caregiver Magazine Online
CareThere.com
www.caregiver.com
www.carethere.com
U.S. Administration on Aging ­ Caregiver Resources
Thirdage.com - Caregiving
http://www.aoa.dhhs.gov/caregivers/default.htm
www.thirdage.com/family/caregiving
Web Of Care
Eldercare Online
www.webofcare.com/home.html
www.ec-online.net
Well Spouse Foundation
www.wellspouse.org
128

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A P P E N D I X H : C A R E G I V E R B O O K S / G U I D E S
Houts, Peter. American College of Physicians Home
Care Guide for Cancer: For Family and Friends
Giving Care at Home. Philadelphia:American College of
Physicians, 1994.
Ilardo, Joseph & Rothman, Carole. I'll Take Care of You:
A Practical Guide for Family Caregivers. Oakland,
California: New Harbinger, 1999.
Levine, Carol, (Ed.) Always on Call: When Illness Turns
Families into Caregivers. New York: United Hospital
Fund, 2000.
American Cancer Society. Caring for the
Lipsyte, Robert. In the Country of Illness: Comfort and
Patient with Cancer at Home: A Guide for
Advice for the Journey. New York:Alfred A. Knopf, 1998.
Patients and Families. Atlanta:American
McFarlane, Rodger & Bashe, Philip. The Complete
Cancer Society, 1998.
Bedside Companion: A No-Nonsense Guide to
Beedle, Joyce & Dunn, Louise (Editors). The
Caring for the Seriously Ill. New York: Fireside, 1999.
Carebook: A Workbook for Caregiver
McGonigle, Chris. Surviving Your Spouse's Chronic
Peace of Mind. Portland, Oregon: Lady Bug
Illness: A Compassionate Guide. New York: Henry Holt
Press, 1991.
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Berman, Claire. Caring for Yourself While
Meyer, Maria, Derr, Paula, & Hatfield, Mark. The Comfort
Caring for Your Aging Parents: How to
of Home: An Illustrated Step-by-Step Guide for
Help, How to Survive. New York: Henry Holt &
Caregivers. Portland, Oregon: CareTrust Publications, 1998.
Company, 1996.
National Family Caregivers Association. The Resourceful
Brammer, Lawrence & Bingea, Marian. Caring
Caregiver: Helping Family Caregivers Help
for Yourself While Caring for Others: A
Themselves. St. Louis, Missouri: Mosby, 1996.
Caregiver's Survival and Renewal Guide.
New York: Vantage Press, 1999.
Olshevski, Jodi, Katz,Anne, & Knight, Bob. Stress
Reduction for Caregivers. Philadelphia: Brunner/Mazel,
Brandt,Avrene. Caregiver's Reprieve: A
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Guide to Emotional Survival When You're
Caring for Someone You Love (The
Ortho Biotech. Strength for Caring: Education and
Working Caregiver Series). San Luis Obispo,
Support for Family Cancer Caregivers. Raritan, New
California: Impact Publishers, 1997.
Jersey: Ortho Biotech, Inc., 1998.
Cancer Care. A Helping Hand: The Resource
Schonhoff, Shelly & Speaker, Joanna. Family Caregiver
Guide for People with Cancer. New York:
Guide: A Comprehensive Handbook for Caring for
Cancer Care, Incorporated, 1996.
Your Loved One at Home. Dubuque, Iowa: Simon & Kolz
Publishing, 1998.
Dolan, Michael. How to Care for Your Aging
Parents...and Still Have a Life of Your
Unger, James A. From Caregiver to Caregiver: How to
Own! Los Angeles: Mulholland Pacific, 1992.
Cope. Lima, Ohio: CSS Publishing Company, 1995.
Hereema, Carol. A Caregiver's Guide to
Visiting Nurse Associations of America. Caregiver's
Giving Medicines. Upper Saddle River, New
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Jersey: Prentice Hall, 1999.
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