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Caregiver Resources, Clinical Trials, Prescription Drug Assistance, Support, Hospice, Hotlines and Forums, Insurance/Financial Assistance, Lodging, Lymphedema, Other Types of Melanoma, Pain Management, Radiation, Suggested Reading, Survivorship, Transportation
Caregiver Resources
Caregiver Action Network
1130 Connecticut Ave, NW
Suite 300
Washington, DC 20036
Phone: (202) 454-3970
www.caregiveraction.org
Caregiver Action Network works to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Family Caregiver Alliance
785 Market Street
Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
www.caregiver.org
FCA seeks to improve the quality of life for caregivers through education, services, research, and advocacy. FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues, and provides assistance in the development of public and private programs for caregivers.
The Caregiver Relief Fund
900 South Wabash Avenue
Suite 603
Chicago, IL 60605
A social venture committed to caring for caregivers. Provides resources, assistance and a voice to over 50 million Americans who are currently caregivers to the chronically ill, aged and disabled.
4th Angel
9500 Euclid Avenue R36
Cleveland, OH 44195
(866) 520-3197
www.4thangel.org
The 4th Angel Program is part of the Scott Hamilton CARES Initiative. This is a free, national service which provides a one-to-one supportive relationship (phone or email based) to cancer patients and their caregivers. The program has over 400 patient and caregiver mentors who are at least 6 months post treatment, and continues to train more mentors.
Caregivers4Cancer
P.O.Box 153448
Irving, Texas 75015
(800) 787-2840
(972) 513-0668
Caregivers4cancer.com
Organization strives to educate and assure caregivers and oncology teams there are ways to ease the journey’s relentless demands. Goal is to help caregivers emerge on the other end with less stress, more energy and a feeling of accomplishment that they did all they could for their loved ones.
Caregiver.com
3350 Griffin Road
Fort Lauderdale, FL 33312
954-893-0550
1-800-829-2734
www.caregiver.com
A leading provider of information, support and guidance for family and professional caregivers. Founded in 1995as a producer of Today’s Caregiver magazine, the first national magazine dedicated to caregivers. Caregiver Media Group and all of its products are developed for caregivers, about caregivers and by caregivers.
Clinical Trials
ClinicalTrials.Gov
The National Cancer Institute at the National institute of Health
Bethesda, Maryland
1-800-4-Cancer
www.clinicaltrials.gov
A registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details.
Oncolink
The Perelman Center for Advanced Medicine
3400 Civic Center Blvd
Suite 2338
Philadelphia, PA 19104
215-349-8895
www.oncolink.org
Comprehensive information about specific types of cancer, updates on cancer treatments and news about research advances. Information is updated every day and provided at various levels, from introductory to in-depth.
Dermatology & Early Detection
Center for Disease Control (CDC) Centers for Disease Control and Prevention
4770 Buford Hwy NE
MS K-64
Atlanta, GA 30341
800-232-4636
cdcinfo@cdc.gov
www.cdc.gov
Federal agency that provides information on cancer prevention and control.
American Academy of Dermatology
930 E. Woodfield Road
Schaumburg, IL 60173
1445 New York Avenue, NW, Suite 800
Washington, DC 20005
(866) 503-SKIN (7546)
International: (847) 240-1280
www.aad.org
Founded in 1938. With a membership of more than 17,000, it represents virtually all practicing dermatologists in the United States, as well as a growing number of international dermatologists. Find free screening locations as well as information on research, diagnosis and treatment.
DermWeb
The Department of Dermatology and Skin Science
University of British Columbia
835 West 10th Avenue
Vancouver, B.C.
Canada V5Z 4E8
604-875-4747
www.DermWeb.com
DermWeb is a premier destination for dermatology links and resources on the Web. There are several areas of interest for practicing dermatologists, for dermatology students, and for the general public.
The Skin Cancer Foundation
149 Madison Av.
Suite 901
New York, NY 10016
212-725-5176
1-800-754-6490 (1-800-SKIN-490)
www.skincancer.org
Educates about skin cancer and its prevention by means of sun protection; as well as the need for early detection, and prompt, effective treatment. It is the only international organization devoted solely to combating the world’s most common cancer, now occurring at epidemic levels.
National Cancer Institute
6116 Executive Boulevard, Suite 300
Bethesda, MD 20892
1-800-422-6237 (1-800-4-CANCER)
TYY: 1-800-332-8615
www.cancer.gov
The NCI coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
Prescription Drug Assistance
Needy Meds, Inc.
P.O. Box 219
Gloucester, MA 01931
(800) 503-6897
www.needymeds.org
This service provides information on drugs and offers applications (if available) for financial assistance, coupons for drugs, discount drug cards, free/low cost clinics and government program information.
Together Rx Access Card
One Outlet Lane
Bald Eagle Court
Lock Haven, PA 17745
(800) 444-4106
http://www.togetherrxacces.com
Free prescription savings program for qualified enrollees, which provides savings on more than 300 FDA-approved prescription drugs.
Partnership for Prescription Assistance
1-888-4PPA-NOW (1-888-477-2669)
www.pparx.org
This program helps uninsured and financially struggling patients get access to nearly 500 healthcare and prescription assistance programs that offer medicines for free or nearly free.
National Conference of State Legislatures
State Pharmaceutical Assistance Programs
http://www.ncsl.org
More than 30 states have programs that will give discounts on prescription drugs, often for free. Visit web site to learn more about the various programs state legislatures have developed.
RxAssist
111 Brewster Street
Pawtucket, RI 02860
401-729-3284
www.rxassist.org
Patient assistance programs run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles.
RxHope
P.O. Box 42886
Cincinnati, OH 45242
1-877-267-0517
www.RxHope.com
Advocate in making the patient assistance program journey easier and faster by supplying vital information and help.
Support
The Cancer Support Community
1050 17th Street, NW
Suite 500
Washington DC 20036
202-659-9709
cancersupportcommunity.org
help@cancersupportcommunity.org
An international non-profit dedicated to providing support to people affected by cancer. Services are available through a network of professionally led community-based centers, hospitals, community oncology practices and other non-profits, as well as online.
CanCare
Fighting Cancer with Hope
9575 Katy Freeway, Suite 428
Houston, Texas 77024
713-461-0028
1-888-461-0028
www.cancare.org
Cancer survivors of more than 50 different types of cancer volunteer for CanCare to provide emotional support to those currently facing a battle with cancer. Family members of survivors provide emotional support to family members of cancer patients.
Caring Bridge
1715 Yankee Doodle Road
Suite 301
Eagan, MN 55121
651-452-7940
651-681-7115
www.caringbridge.org
Free, personal and private websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.
MyLifeLine.org Cancer Foundation
55 Madison St., Ste. 750
Denver, CO 80206
303-549-0405
www.mylifeline.org
support@mylifeline.org
A 501(c)(3) nonprofit organization that encourages cancer patients and caregivers to create free, customized websites. Our mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing.
CancerCare
275 Seventh Ave. Floor 22
New York, NY 10001
1-800-813-HOPE (4673)
info@cancercare.org
www.Cancercare.org
National Office serves people with cancer and their loved ones throughout the entire 50 states, Puerto Rico, and the U.S. Virgin Islands.
US Dept of Health & Human Services
P.O. Box 1133
Washington, DC 20013-1133
Write to healthfinder.gov at Health and Human Services Department for easy entry point to trustworthy health information.
National Cancer Institute (NCI)
1-800-4-cancer
www.cancer.gov
Very comprehensive information from the US Government agency wing of the National Institute of Health (NIH).
Web MD
A medical education site from a company that helps both consumers and healthcare providers navigate the healthcare community.
Hospice
HFA Hospice Foundation of America
1710 Rhode Island Ave, NW
Suite 400
Washington, DC 20036
202- 457-5811 or 800- 854-3402
www.Hospicefoundation.org
hfaoffice@hospicefoundation.org
National Hospice Foundation
1731 King Street, Suite 200
Alexandria, Virginia 22314
Caring Connections
800-658-8898
Multilingual Line: 877-658-8896
Hotlines and Forums
Melanoma International Foundation
Toll free Patient and Family Helpline: 1-866-463-6663
Forum: Melanoma Forum
Dana Farber Cancer Institute
Family Studies Cancer Risk Line
Voice: 1-800-828-6622
www.dana-farber.org
Information regarding familial cancers
Patient Advocate Foundation
1-800-532-5274 (Mon.-Thurs., 8am-8pm; Fri., 8:30am-7pm EST)
www.patientadvocate.org
Provides education and legal counseling to cancer patients (relative to a diagnosis) concerning managed care, discrimination, insurance and financial issues.
Hereditary Cancer Center
Creighton University School of Medicine
2500 California Plaza
Omaha, NE 68178
1-800-648-8133 (Mon.-Fri., 8am-5pm CST)
http://medschool.creighton.edu/centers/hcc/
Studies family-linked cancer. Counseling, information on clinical trials, cancer and hereditary factors.
Cancer Information Service
Sponsored by National Cancer Institute.
1-800-422-6237
www.cancer.gov
Provides information about cancer and cancer-related resources to patients, the public and health professionals. Offers one-on-one smoking cessation counseling and literature. Free publications.
Skin Cancer Foundation
1-800-754-6490 (Mon.-Fri., 9am-5pm EST)
www.skincancer.org
Provides educational materials and information on skin cancer and treatment.
Cancer Research Institute
1-800-992-2623 (Mon.-Fri., 9am-5pm EST)
www.cancerresearch.org
Provides general cancer resource information. Supports leading-edge research aimed at developing immunologic methods of preventing, treating and curing cancer.
Cancer Information and Counseling Line
1-800-525-3777
(Mon.-Fri., 8:30am-5pm MST)
Provides current medical information and counseling for cancer issues.
Cancer Hope Network
1-877-467-3638 (Mon.-Fri., 9am-5:30pm EST)
www.cancerhopenetwork.org
One-on-one support offered to cancer patients and their families undergoing cancer treatment from trained volunteers who have survived cancer themselves.
BLOCH Cancer Hotline
1-800-433-0464
Networks persons with cancer and home volunteers with same type of cancer. Free books about cancer.
Insurance/Financial Assistance
Good Days
6900 N Dallas Pkwy,
Suite 200
Plano, TX 75024
(877) 968-7233
(972) 608-7141
http://www.mygooddays.org/
Good Days exists to improve the health and quality of life of patients battling chronic disease, cancer or other life-altering conditions who cannot afford the medications they so desperately need.
HealthWell Foundation
P.O. Box 4133
Gaithersburg, MD 20878
800-675-8416
www.healthwellfoundation.org
The HealthWell Foundation® provides full or partial financial assistance to eligible individuals who cannot afford their insurance co-payments, premiums, deductibles for certain treatments, and other out-of-pocket health care expenses.
Medicare & Medicaid
7500 Security Blvd
Baltimore, MD 21244-1850
800-318-2596
www.healthcare.gov/medicaid-chip/
800-MEDICARE
www.medicare.gov
Medicare is a federal system of health insurance for people over 65 years of age, and Medicaid assists low-income individuals and certain younger people with disabilities.
National Patient Advocate Foundation (NPAF)
725 15th St, NW, 10th Floor
Washington, DC 20005
202-347-8009
www.npaf.org
NPAF provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.
Lodging
Joe’s House
505 E 79th Street
New York, NY 10075
877-563-7468
www.joeshouse.org
Joe’s House website lists thousands of places to stay across the country near hospitals and treatments centers that offer a discount for traveling patients and their loved ones.
Healthcare Hospitality Network, Inc.
P.O. Box 1439
Gresham, OR 97030
(800) 542-9730
http://www.hhnetwork.org/
The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities. The mission of HHN is to support homes that help and heal to be more effective in their service to patients and families.
Hope Lodge –American Cancer Society
(800) 227-2345
WEBSITE
Hope Lodge offers cancer patients and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Currently, there are 31 Hope Lodge locations throughout the United States. Accommodations and eligibility requirements may vary by location.
Lymphedema
National Lymphedema Network
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
1-800-541-3259
415-908-3681
www.lymphnet.org
A non-profit organization founded in 1988 to provide education and guidance to lymphedema patients, health care professionals and the general public by disseminating information on the prevention and management of primary and secondary lymphedema.
Other Types of Melanoma
Mucosal Melanoma
Oral Cancer Foundation
3419 Via Lido #205
Newport Beach, CA 92663
949-723-4400
www.oralcancerfoundation.org
The Oral Cancer Foundation is a non-profit 501 (c) (3) public service charity that provides information, patient support, sponsorship of research and advocacy related to this disease. At the forefront of our agenda is to promote solid awareness in the minds of the American public about the need to undergo an annual oral cancer screening and an outreach to the dental community to provide this service as a matter of routine practice.
Ocular Melanoma Foundation
P.O. Box 29261
Richmond, VA 23242-0261
OMF aspires to be the top destination for up-to-date OM-related educational information, a meeting place, and advocacy resource. For doctors and researchers, OMF strives to be the connective tissue, facilitating interdisciplinary cancer research.
Pain Management
American Academy of Pain Management
The largest pain management organization in the nation and the only one that embraces an integrative model of care, which is patient-centered, focuses on the “whole” person, is informed by evidence, and brings together, all appropriate therapeutic approaches to reduce pain and achieve optimal health and healing. The Academy offers continuing education, publications, and advocacy.
American Chronic Pain Association
PO Box 850
Rocklin, CA 95677
1-800-533-3231
https://theacpa.org
Since 1980, the ACPA has offered peer support and education in pain management skills to people with pain, family and friends, and health care professionals. The information and tools on our site can help you to better understand your pain and work more effectively with your health care team toward a higher quality of life.
Radiation
RT Answers
American Society of Radiation Oncology
8280 Willow Oaks Corporate Drive, Suite 500
Fairfax, VA
703-502-1550 or 1-800-962-7876
www.rtanswers.org
Web site explains to patients, their families and the public how doctors called radiation oncologists use radiation therapy to treat cancer safely and effectively.
Radiation Therapy Fact Sheet
National Cancer Institute
www.cancer.gov
A fact sheet that defines the different types of radiation therapy and discusses scientific advances that improve the effectiveness of this treatment.
Suggested Reading
Melanoma: Not Just Skin Cancer
By Catherine M. Poole with Contributing Editors: Jedd Wolchok, MD and Keith Flaherty, MD
Her new book, Melanoma: Not Just Skin Cancer, is a comprehensive guide to melanoma treatments. She tells her own survival story, as well as the stories of others. Since 2012, scientific advances have allowed even those with stage IV melanoma to survive and thrive. Poole wants every patient to find hope, but also clarity. Written for a lay audience, Melanoma: Not Just Skin Cancer explains the benefits of two primary but different melanoma treatments: targeted therapy and immunotherapy.
Melanoma: Prevention, Detection and Treatment
By Catherine M. Poole and Dupont Guerry IV, M.D.
A complete and up-to-date guide for anyone newly diagnosed with melanoma and for others who are concerned about detecting and preventing it.
The Emotional Survival Guide for Caregivers
By Barry J Jacobs
Jacobs gives wonderful advice for one of the hardest jobs in the world.
In the Country of Illness : Comfort and Advice for the Journey
By Robert Lipsyte
Anyone who will ever have to negotiate the minefields of today’s medical system while suffering from a serious illness or caring for a loved one will greatly welcome this outstanding guide from the viewpoint of being a patient as well as a caregiver.
The Home Care Guide for Cancer
By American College of Physicians
Written for a broad audience, this easy-to-use workbook was designed for home caregivers, patients, support groups, and education programs; it features easy-to-read type and an index for quick reference. The authors include oncology nurses, social workers, psychologists, physicians, family caregivers, and persons with cancer.
A Physician’s Guide to Pain and Symptom Management in Cancer Patients
By Janet L. Abrahm, M.D.
This book is important for all dimensions of patient care — not just cancer. Every doctor in clinical practice needs this book. Every patient will benefit from it.
What Helped Me Through: Cancer Survivors Share Wisdom and Hope
Edited by Julie K. Silver, MD
Hundreds of survivors from all walks of life share their heartfelt reflections and practical solutions for “getting through” the cancer journey.
The Mindful Way Through Depression
Mark Williams, John Teasdale, Zindel Segal, Jon Kabat-Zinn
A useful guide to achieving emotional balance. Comes with a companion CD of guided meditations.
Dancing in Limbo
by Glenna Halvorsen-Boyd and Lisa K. Hunter
Written by two cancer patients, one with melanoma; addresses in a refreshing way the psychological issues that cancer patients face. It will serve as a guide to help cancer patients anticipate feelings and stages of the coping process. It will help demystify the uncertain path of cancer survivorship.
When Someone You Love Has Cancer-A Dell Caregiving Guide
By Suzanne LeVert and Lynn Sonberg
Provides straightforward advice on how to obtain necessary information from doctors, foster a hopeful and supportive environment, cut through insurance red tape, carry out needed legal steps, and hospice information.
Surviving Cancer Emotionally-Learning How to Heal
By Roger Granet, M.D.
A consulting psychiatrist at Memorial Sloan-Kettering, Granet provides a wealth of information about many types of cancers and treatments such as surgery, radiation, chemotherapy and bone marrow transplants. But his central focus is the emotional toll of all aspects of the disease and the importance of seeking support from the many available resources to cope successfully.
The Human Side of Cancer: Living with Hope, Coping with Uncertainty
By Jimmie C. Holland and Sheldon Lewis
Jimmie C. Holland, M.D., of Memorial Sloan-Kettering Cancer Center, explores the broad range of emotions people with cancer and their loved ones experience from the moment of diagnosis through the treatment and its aftermath.
PubMed
U.S. National Library of Medicine
National Institute of Health
PubMed comprises more than 20 million citations for biomedical literature from MEDLINE, life science journals and on-line books. Provides quick access to medical research through the National Library of Medicine.
https://www.ncbi.nlm.nih.gov/pubmed
Survivorship
National Coalition for Cancer Survivorship (NCCS)
1010 Wayne Avenue
Suite 770
Silver Spring, MD 20910
301-650-9127 or 888-650-9127
www.canceradvocacy.org
info@canceradvocacy.org
The oldest survivor-led cancer advocacy organization in the country, advocating for quality cancer care for all Americans and empowering cancer survivors.
Abramson Cancer Center’s Survivorship Program
Abramson Cancer Center, University of Pennsylvania
Philadelphia, PA
https://www.pennmedicine.org/cancer/navigating-cancer-care/survivorship
215-615-3329
Linda Jacobs, PhD, RN, Program Director
linda.jacobs@uphs.upenn.edu
Dana-Farber’s Adult Survivorship Program
Dana-Farber Cancer Institute
Boston, MA
www.dana-farber.org/For-Adult-Cancer-Survivors.aspx
617-632-4523
Ken Miller, MD, Program Director
LAFClinic@dfci.harvard.edu
Survivorship Program
Fred Hutchinson Cancer Research Center
Seattle, WA
www.fhcrc.org/patient/support/survivorship
K. Scott Baker, MD and Karen Syrjala, PhD
Co-Directors, Survivorship Program
206-667-2814
survivor@fhcrc.org
Memorial Sloan-Kettering Cancer Center Survivorship Program
New York, NY
www.mskcc.org
Mary McCabe, RN, MA, Program Director
212-639-2581
survivorship@mskcc.org
The Survivorship Center
Ohio State University Comprehensive Cancer center-James Cancer Hospital and Solove Research Institute Columbus, Ohio
http://cancer.osu.edu
800-293-5066
Barbara Andersen, PhD, Program Director
614-293-6401
andersen.1@osu.edu
Survivorship Program
UCLA’s Jonsson Comprehensive Cancer Center
Los Angeles, CA
www.cancer.ucla.edu
Patricia Ganz, MD, Program Director
310-206-1404
Pganz@mednet.ucla.edu
Survivorship Program
University of Colorado Cancer Center
Denver, CO
Allison Jones, ND, Program Director
720-848-0395
allisonjones@uch.edu
Carolina Well Survivorship Program
University of North Carolina at Chapel Hill
Lineberger Comprehensive Cancer Center
Chapel Hill, NC
www.carolinawell.org
Marci Campbell, PhD and Don Rosenstein, MD
Co-Directors, Carolina Well Survivorship Program
919-966-7230
campbel7@email.unc.edu
Transportation
Air Care Alliance
888-260-9707
http://www.aircarealliance.org/
A nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. This site lists groups who volunteer to fly in support of health care initiatives, patient transport, disaster relief, environmental support, and other missions of public service.
Angel Wheels to Healing
Angel Wheels to Healing (formerly Angel Bus) is a non-profit charity, dedicated to providing non-emergency, long-distance ground transportation to financially disadvantaged, ambulatory patients who are traveling for treatment. A typical trip supported by Angel Wheels to Healing does not exceed 300 miles (one-way), and we do not normally handle trips within a local area or community. Exceptions are made on a case-by-case basis, routinely for cancer patients traveling daily for treatment.
Angel Flight, Inc. People Flying People in Need
12345 E. Skelly Drive
Tulsa, OK 74128
Phone: 918-749-8992
angel@angelflight.com
www.angelflight.com
A non-profit organization of pilots and other volunteers dedicated to serving the community by arranging free private air transportation for medical patients who cannot afford to utilize normal, commercial transportation. Angel Flight also provides services to blood, organ and tissue banks. Angel Flight is a member of Air Care Alliance, a group of 37 organizations providing similar services throughout the United States. These groups are coordinated through a toll-free service (NPATH) that helps individuals in need find assistance in their area.
Angel Charity Network
(877) 621-7177
www.aircharitynetwork.org
Provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis. This is a network of volunteer pilot organizations – nationwide.
Corporate Angel Network
1-914-328-1313.
www.corpangelnetwork.org
Free flights for cancer patients and their families. Private jets used by corporations that have empty seats, free flights. No financial requirements.
Footprints in the Sky
7375 South Peoria Street Suite #209, B-10
Centennial, CO
303- 799-0461
http://www.footprintsflights.org/
A 501(c)(3) non-profit corporation dedicated to providing flights to medical facilities throughout the United States for people in need of critical and life-saving medical care.
Lifeline Pilots
309-697-6865
www.lifelinepilots.org
A private, non-profit organization that provides people in medical and financial distress with access to free air transportation on small (4-6 seat), private aircraft for health care and other compelling human needs. (Local flights.)
Mercy Medical Angels
800-296-1217
www.mercymedical.org
The oldest and largest charitable medical air transportation non-profit in the United States. Free airline tickets for cancer patients and their escorts are available year around. (MMA) is a non-profit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants.
National Patient Air Transport Helpline (NPATH)
800-296-1217
www.patienttravel.org
Provides information about all forms of charitable, long-distance medical air transportation. Will refer cancer patients to Mercy Medical Airlift for free tickets.
Updated September 1, 2018