Resources

Along my journey, I have found successes and obstacles as I navigate the caregiver process. Below is a list of caregiver links and resources that I hope will help you to ease your frustrations and provide encouragement and support for the great work you do!

CANCER – GENERAL INFORMATION:

American Cancer Society (ACS): http://www.cancer.org/
National Cancer Institute: http://www.cancer.gov/
National Comprehensive Cancer Network: http://www.nccn.org/index.asp
National Coalition for Cancer Survivorship: http://www.canceradvocacy.org/
Lance Armstrong Foundation: http://www.livestrong.org/
Moss Reports: http://www.cancerdecisions.com/
R.A. Bloch Cancer Foundation: http://blochcancer.org/
Vital Options Telesupport Cancer Network: http://www.vitaloptions.org/

CANCER – SPECIFIC DIAGNOSES:

Mesothelioma Cancer Alliance: http://www.mesothelioma.com/
Mesothelioma Symptoms: http://www.mesotheliomasymptoms.com/
Mesothelioma Center: http://asbestos.com
Adenoid Cystic Carcinoma Organization: http://www.accoi.org/
American Brain Tumor Association: http://www.abta.org/
Breastcancer.org: http://www.breastcancer.org/
Breast Cancer Resources: http://www.publichealthdegree.com/resources/breast-cancer/
Facing our Risk of Cancer Empowered: http://www.facingourrisk.org/
Inflammatory Breast Cancer Research Foundation: http://www.ibcresearch.org/
Y-ME National Breast Cancer Organization: http://www.y-me.org/
Women’s Cancer Network: http://www.foundationforwomenscancer.org/
Caring for Carcinoid: http://www.caringforcarcinoid.org/
National Cervical Cancer Coalition: http://nccc-online.org/
Colon Cancer Alliance: http://www.ccalliance.org/
Colorectal Cancer Coalition: http://fightcolorectalcancer.org/
International Society for Cutaneous Lymphoma: http://www.cutaneouslymphoma.org/home/
Leukemia and Lymphoma Society: http://www.lls.org/
Lung Cancer Online: http://www.lungcanceronline.org/
Lymphoma Research Foundation: http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6296735
International Myeloma Foundation: http://myeloma.org/Main.action
National Lymphedema Network: http://www.lymphnet.org/
Neuroblastoma Children’s Cancer Society: http://www.neuroblastomacancer.org/
National Kidney Cancer Association: http://www.kidneycancer.org/
National Ovarian Cancer Coalition: http://www.ovarian.org/
National Prostate Cancer Coalition: http://zerocancer.org/
Pancreatica: http://www.pancreatica.org/
Pancreatic Cancer Action Network: http://www.pancan.org/
Prostate Cancer Foundation: http://www.pcf.org/site/c.leJRIROrEpH/b.5699537/k.BEF4/Home.htm
Liddy Shriver Sarcoma Initiative: http://sarcomahelp.org/

CANCER SUPPORT GROUPS:

Cancer Care: http://www.cancercare.org/
Cancer Survivorship: http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/survivorship/index.html
Chemo Angels: http://www.chemoangels.net/
Fertile Hope: http://www.fertilehope.org/
Gilda’s Club: http://www.gildasclub.org/
Look Good…Feel Better: http://lookgoodfeelbetter.org/
Lotsa Helping Hands: http://www.lotsahelpinghands.com/
Men Against Breast Cancer: http://www.menagainstbreastcancer.org/
Mothers Supporting Daughters with Breast Cancer: http://www.mothersdaughters.com/
Onco Chat: http://www.oncochat.org/
Pregnant With Cancer Network: http://www.pregnantwithcancer.org/
Prepare to Live: http://www.preparetolive.org/
The Wellness Community: http://www.thewellnesscommunity.org/
The Well Spouse Foundation: http://www.wellspouse.org/
TLC Tender Loving Care: http://www.tlcdirect.org/
Young Survival Coalition: http://www.youngsurvival.org/

CAREGIVER BLOGS/ WEBSITES I PERSONALLY FOLLOW:

CAREGIVER SUPPORT ORGANIZATIONS:

Caregiver Partnership: http://caregiverpartnership.com
Caregiver’s Voice: http://www.thecaregiversvoice.com/
The Education in Palliative and End-of-life Care for Caregivers (EPEC – Caregivers): http://epec.net/epec_caregiver.php
Family Caregiver Alliance: http://www.caregiver.org
National Alliance for Caregiving (NAC): http://www.caregiving.org
National Caregivers Library: http://www.caregiverslibrary.org/
National Family Caregivers Association (NFCA): http://www.nfcacares.org
National Respite Locator Service: http://www.chtop.com/locator.htm
Well Spouse Foundation: http://www.wellspouse.org
Wellness Community: http://www.wellness-community.org
Financial Resources: http://www.cancer.net/publications-and-resources

CHILDREN – COPING WITH A PARENT’S CANCER:

About.com: http://cancer.about.com/od/newlydiagnosed/a/children.htm
American Cancer Society: http://csn.cancer.org/node/217626
CancerCare: http://www.cancercare.org/reading_room/ask/archive/children-archive.php
Familydoctor.org: http://familydoctor.org/online/famdocen/home/common/cancer/treatment/728.html
Hospice.net – When a Parent Dies: http://www.hospicenet.org/html/parent.html
Stanford Medicine Cancer Center: http://cancer.stanford.edu/patient_care/amenities/resourcesParentsWithCancer/

CHILDREN WITH CANCER:

American Cancer Society: children and cancer: http://www.cancer.org/Cancer/CancerinChildren/index
American Childhood Cancer Association: http://www.candlelighters.org/Information/onlinesupport.aspx
Bandaides and Blackboards: http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
Camp Ronald McDonald for Good Times: http://www.campronaldmcdonald.org/
Camp Sunshine: http://www.campsunshine.org/
CancerCare: http://www.cancercare.org/get_help/special_progs/cc_for_kids.php
Cancer Links USA: http://www.cancerlinksusa.com/cancer/young/yngcoping.htm
Children’s Cancer Association: http://www.joyrx.org/
Group Loop: http://www.grouploop.org/
Hopes and Heroes – Children’s Cancer Fund: http://www.hopeandheroes.org/
I’m Too Young For This: http://stupidcancer.com/
Kids Konnected: http://www.kidskonnected.org/
Look Good Feel Better – for teens: http://www.2bme.org/noflash.html
Make a Child Smile: http://www.makeachildsmile.org/
Make a Wish Foundation: http://www.wish.org/
National Cancer Institute: http://www.cancer.gov/cancertopics/coping
National Childhood Cancer Foundation: http://www.curesearch.com/
National Children’s Cancer Society: http://www.nationalchildrenscancersociety.org/
Parents Against Cancer: http://www.parentsagainstcancer.com/
Ped-Onc Resource Center: http://www.ped-onc.org/cfissues/cfissues.html

CHILDREN WITH DISABILITIES OTHER THAN CANCER:

National Dissemination Center for Children with Disabilities: http://nichcy.org/
The Painted Turtle: http://www.thepaintedturtle.org/turtle/
Children’s Disabilities Information: http://www.childrensdisabilities.info/

COMMUNICATING WITH FAMILY & FRIENDS:

Caringbridge: http://www.caringbridge.org/
National Cancer Institute – Coping with Cancer for Caregivers, Family and Friends: http://www.cancer.gov/cancertopics/coping/familyfriends
Susan B. Komen – Communicating with Family and Friends, Living Beyond Breast Cancer: http://apps.komen.org/forums/tm.aspx?m=259425
American Cancer Society, Talking About Your Cancer with Family and Friends: http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/TalkingaboutCancer/talking-with-friends-and-relatives-about-your-cancer
Parent Guide News: Living with Breast Cancer – Telling Family and Friends: http://www.parentguidenews.com/Catalog/WomensInterest/LivingWithBreastCancer/
Family Life: http://www.cancer.net/patient/Coping/Relationships+and+Cancer/Family+Life

DEPRESSION:

More about Treatment for Depression: http://depressionandtreatment.org

HOME HEALTH CARE:

American Association of Retired Persons (AARP): http://www.aarp.org
Centers for Medicare and Medicaid Services (CMS): http://cms.hhs.gov
Medicare: http://medicare.gov
Emergency Investigational New Drug Program (IND): http://www.fda.gov/Drugs/default.htm
U.S. Department of Health and Human Services Office of Disease Prevention and Health Promotion: http://www.health.gov/
National Health Information Center (NHIC): http://www.health.gov/nhic/
Health Insurance Association of America (HIAA): http://www.hiaa.org/
Job Accommodation Network: http://askjan.org/
National Association for Home Care (NAHC): http://www.nahc.org/
National Consumers League (NCL): http://www.nclnet.org/

HOSPICE AND PALLIATIVE CARE:

Americans for Better Care of the Dying (ABCD): http://abcd-caring.org/
Association of Death Education and Counseling (ADEC): http://www.adec.org//AM/Template.cfm?Section=Home#
Caring Connections: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1
Death and Dying: http://death-and-dying.org/
Education in Palliative and End of Life Care: http://www.epec.net/
Encyclopedia of Death and Dying: http://www.deathreference.com/
Get Palliative Care: http://www.getpalliativecare.org/
Hospice Directory: http://www.hospicedirectory.org/
Hospice Foundation of America: http://www.hospicefoundation.org/
Hospice Patients Alliance: http://www.hospicepatients.org/
Initiative for Pediatric Palliative Care: http://www.ippcweb.org/
International Association for Hospice & Palliative Care: http://www.hospicecare.com/
MedlinePlus: end of Life Issues – Death and Dying: http://www.nlm.nih.gov/medlineplus/endoflifeissues.html
National Hospice and Palliative Care Organization (NHPCO): http://www.nhpco.org/templates/1/homepage.cfm
National Palliative Care Research Center: http://www.npcrc.org/
Spiritual Care Program: http://www.spcare.org/
Assisted Living Directory: http://www.assisted-living-directory.com/content/cancer-assisted-living.cfm

INSURANCE/DISABILITY ISSUES:

Health Insurance for Pudendal Education: http://www.pudendalhope.org/forum/viewforum.php?f=24
Medicine.net – Disability Insurance and Women: http://www.medicinenet.com/script/main/art.asp?articlekey=51323
Patient Advocate Foundation: Provides support for issues of insurance and healthcare access. http://www.patientadvocate.org/

PATIENT ADVOCACY GROUPS:

About.com – An Overview of Patient Advocacy: http://patients.about.com/od/caringforotherpatients/a/patadvocacy.htm
Cancer Hope Network: http://www.cancerhopenetwork.org/
Center for Medical Consumers: http://medicalconsumers.org/
Coalition of Cancer Cooperative Groups – Patient Advisory Board: http://www.cancertrialshelp.org/patient_content/pdMainContent.aspx?intAppMode=1
DiagKNOWsis: http://www.diagknowsis.org/
Health Care Information – Patient Advocacy Group List: http://www.healthier-harvest.com/news_articles/medical_information/advocacy_list.htm
WrongDiagnosis: http://www.wrongdiagnosis.com/

REHABILITATION:

Caitlin Raymond International Registry (CRIR): http://www.crir.org/
International Association of Laryngectomees (IAL): http://www.theial.com/ial/
National Association of Hospital Hospitality Houses, Inc. (NAHHH): http://www.nahhh.org/
National Bone Marrow Transplant Link (NBMT): http://www.nbmtlink.org/
National Lymphedema Network (NLN): http://www.lymphnet.org/

TRAVEL & LODGING ASSISTANCE FOR CANCER PATIENTS:

Angel Flight Samaritan: http://www.angelairlinesamaritans.org/
Life Line Pilots: http://www.lifelinepilots.org/
National Patient Travel Center: http://www.patienttravel.org/
Corporate Angel Network: http://www.corpangelnetwork.org/
National Association of Hospital Hospitality Houses, Inc.: http://www.nahhh.org/