Resources to Learn More
Using the Internet for Medical Advice The Cancer Survivors' Bill of Rights Getting Information from the National Cancer Institute Organizations Where You Can "Make a Difference" Cancer Organizations Organizations by Cancer Type Employment and Legal Rights for Cancer Survivors
After you've done some work in cancer-related activities, think about the
choices you made. Then, answer the questions below. You may want to print this
out for a reference.
1. What did you do to make a difference in cancer?
EXAMPLE:
I called my local cancer center volunteer office; found out about a
training to help other survivors; went to the training and was a buddy to two
men diagnosed with prostate cancer.
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
2. Did you find this was the right time for you to get involved? (circle one)
If NO, think about waiting a little while and trying again. If YES,
answer the next questions:
3. What did I like best?
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
4. What did I like least?
__________________________________________________________________
__________________________________________________________________
__________________________________________________________________
5. Do I like doing this work? (circle one)
If NO...
If you don't like this activity or organization, think about changing what you
are doing. For example:
-
If you are working on your own, think about working with an organization.
-
If you are working with an organization, think about working on your own.
-
Switch to another area of interest.
-
Switch to another organization.
It may take some time to find the activity you like best. Sooner or later, you
will find an activity that is the right match for you.
If YES...
If you like what you are doing, you can:
-
Keep doing it.
-
Decide whether you want to do more. Read this document again and find other
activities that interest you.
Remember to slow down. You need to take care of yourself before you can make a
difference in the lives of others.
The Internet is a tool many people use to find medical information and advice.
This includes Web sites as well as online discussion groups such as listservs
and chat rooms.
The Internet can be a valuable source of information about cancer. But sometimes
Internet information can be false, unreliable, or misleading. Don't believe
everything you see on the Internet. Talk with your doctor about the medical
advice you find and make sure the information makes sense for you.
Here are eight questions to keep in mind when using the Internet for medical
advice.
-
Who runs this site?
All Web sites should include the name of the organization that sponsors (pays
for) it, as well as the person who runs the Web site.
-
What is the purpose of the site?
The purpose (or goal) of the site should be clearly stated. You can often find
this by clicking on a link that says, "About This Site," or similar words.
-
Who pays for the site?
It costs money to run a Web site. Find out if the site includes advertisements
such as "banner ads." Think about the company that pays for the site; they may
only want you to know about their services or products.
-
Where does the information come from?
Many Web sites include information from other sources. The Web site should make
clear where information comes from. All medical articles should have a list of
references where you can go to learn more. Opinions and advice should be
clearly labeled and set apart from information based on research results.
-
How is the information selected?
Is there an editorial board? Do people with good medical qualifications review
the material before it is posted?
-
How current is the information?
Web sites should be reviewed and updated on a regular basis. It is important
that medical information be current and that its most recent update or review
date appears on the site. Even if the information has not changed, you need to
know that the site "owners" have reviewed it recently to make sure the
information is still correct.
-
How can users contact the Web site "owners"?
There should always be a way for you to contact the site owners with problems,
feedback, and questions.
-
How does the chat room or discussion area work?
If the site has a chat room or other online discussion areas, it should tell
you how the service works. Is it led by someone? By whom, and why? It is always
a good idea to spend time reading the discussion before joining in, so that you
feel comfortable with the environment before you get involved.
(Excerpts from the National Coalition for Cancer Survivorship's Survivors' Bill
of Rights. NOTE: This is not a national law.)
The National Coalition for Cancer Survivorship presents this version of the
Survivors' Bill of Rights to call public attention to survivor needs, to
enhance the quality of cancer care, to empower cancer survivors, and at the
same time bring greater satisfaction to them and their physicians, employers,
families and friends.
Survivors have the right to continuous lifelong medical care, as needed. The
physicians and other professionals involved should make every effort to be:
-
Sensitive to cancer survivors' lifestyle choices and their need for selfesteem,
dignity and privacy of the information trusted to them;
-
Careful, no matter how long these patients have survived, to take symptoms
seriously, and not to dismiss aches and pains, for fear of recurrence is a
normal part of survivorship;
-
Vigilant to watch for any long-term and late effects of cancer and its
treatment in followup clinics and offices;
-
Informative and open, providing survivors with as much or as little candid
medical information as they wish, and encouraging informed participation, but
not expecting survivors to manage that care on their own;
-
Knowledgeable about counseling and rehabilitation resources and willing to
refer survivors and their families as appropriate for emotional support and
therapy aiming to improve the texture as well as the quantity of time that is
theirs to live.
No matter in which setting their care is offered--be it fee-for-service or some
sort of managed care system--survivors have the right to quality care
emphasizing:
-
Informed choice--choice of the setting in which care is delivered, choice of
primary physicians and specialists delivering that care, as well as choice of
appropriate, effective and safe treatments (including ongoing clinical trials);
-
Efficient yet humane management of such unfortunate by-products of disease as
fatigue and pain--pain control management for example, which approaches
survivors more as partners in identifying the proper amount of medication
needed at any given time than as potential drug addicts;
-
Appropriate use of hospital and other facilities, wherein cost effectiveness
and patient-centered care are balanced so that no survivor is dismissed--after
a mastectomy, for example--unable to care for her or himself or secure the care
needed to avoid dangerous and painful situations;
-
Constant respect for survivors' wishes as to when and how to discontinue
treatment should that time arise, including the scrupulous honoring of "living
wills" and similar documents.
In their personal lives, survivors, like other Americans, have the right to the
pursuit of happiness. This means they have the right:
-
To talk with their families and friends about their cancer experience if they
wish, but to refuse to discuss it if that is their choice, and not to be
expected to be more upbeat or less blue than anyone else;
-
To be free of the stigma of cancer as a "dread disease" in all social
relations, wherever they may take place--from home to work or market place;
-
To be free of blame for having the disease and of guilt for having survived it;
-
To participate in support groups and other survivor support and/or advocacy
activities as they wish, for in such settings they usually feel less isolated,
more informed, and more able to express their feelings, be they feelings of
hope or of despair, without fear of being regarded as "bad" or "ungrateful" or
simply "uncooperative" patients.
In the workplace, survivors have the right to equal job opportunities. This
means they have the right:
-
To aspire to jobs worthy of their skills, and for which they are trained and
experienced, and thus to not have to accept jobs they would not have considered
before their cancer experience;
-
To be hired, promoted, and accepted on return to work, according to their
individual abilities and qualifications, and not according to "cancer" or
"disability" stereotypes with "reasonable accommodation" under Federal and
state law such as changes in duties or hours, which allows them to work while
receiving medical treatment without falling into a survivors "Catch 22"--too
ill to work, but too healthy to qualify as "disabled" and so entitled to
protection under the Americans with Disabilities Act;
-
To privacy about their medical histories.
Since health insurance is an urgent survivorship concern, every effort should
be made to assure all survivors decent affordable coverage, whether public or
private or provided under managed care or fee-for-service systems. This means:
-
For employers, that survivors have the right to be included in group health
coverage regardless of health history;
-
For physicians, counselors, and other professionals concerned, that they keep
themselves and their survivor-clients informed and up-to-date on the dangers of
health insurance discrimination;
-
For social policy makers, both in government and in the private sector, that
they seek both to broaden insurance programs to include diagnostic procedures
and treatments which help prevent recurrence and ease survivor anxiety and
pain, as well as to lower the unfair barriers often imposed by the accidents of
race, minority culture, age or plain lack of means to pay for adequate health
insurance coverage.
In sum, cancer survivors have the overriding right to access quality health
care. Implicit in that right is universal access to adequate health insurance
coverage. For "quality" becomes an empty word without the means to achieve such
coverage. A cancer may not even be discovered. And if it is, care may be
sub-optimal, no one will be accountable for it and the whole society will be
the losers.
Cancer Information Service
The Cancer Information Service (CIS), a program of the National Cancer
Institute (NCI), is a resource for information and education about cancer.
Through the CIS toll-free telephone number, callers can speak with
knowledgeable staff who can explain medical information in terms they can
easily understand. CIS staff can provide:
-
Answers to questions about cancer.
-
Written materials from the NCI.
-
Referrals to clinical trials and cancer-related services.
-
Assistance in quitting smoking (from information specialists trained in smoking
cessation counseling).
To speak with a CIS information specialist or to order publications on the phone:
Call 1-800-4-CANCER (1-800-422-6237), 9:00 a.m. to 4:30 p.m., local time, Monday
through Friday. Deaf or hearing-impaired callers with TTY equipment should call
1-800-332-8615.
For information 24 hours a day, 7 days a week:
Call 1-800-4-CANCER and select Option 4 to hear recorded information.
To obtain online assistance with cancer information:
Visit the CIS Web site at http://cis.nci.nih.gov
and click on the LiveHelp link between 9:00 a.m. and 5:00 p.m., Eastern time,
Monday through Friday.
To order publications online:
NCI provides access to a large number of publications. To order these materials,
go to the NCI home page, Cancer.gov, and click
on "Publications Locator." Follow the instructions on your screen.
The following organizations provide information, support and other resources to
cancer survivors and those who have helped someone through cancer. Many of
these groups may also have volunteer opportunities in your community, or at the
state or national level.
NOTE: This list was current as of spring 2002. For an up-to-date list of groups,
see the NCI Fact Sheet: National
Organizations That Offer Services to People with Cancer and Their Families,
or call 1-800-4-CANCER.
General Organizations
|
Contact Information |
Description |
American Cancer Society (ACS)
1599 Clifton Road, NE
Atlanta, GA 30329-4251
Tel: 1-800-ACS-2345 (1-800-227-2345)
http://www.cancer.org
|
The ACS is a volunteer health organization that offers a variety of
prevention and early detection programs, as well as cancer information and
support to patients, their families, and caregivers. The ACS also supports
research, provides printed materials, and conducts educational programs. A
local ACS unit may be listed in the white pages of the phone book under
"American Cancer Society."
|
American Institute for Cancer Research (AICR)
1759 R Street, NW
Washington, DC 20009
Tel: 1-800-843-8114
http://www.aicr.org
e-mail: aicrweb@aicr.org |
The AICR provides information about cancer prevention, particularly
through diet and nutrition. It offers a toll-free nutrition hotline, pen pal
support network, funding of research grants, and a wide array of consumer and
health professional brochures and health aids about diet and nutrition and
their link to cancer and cancer prevention. The AICR also offers the AICR
CancerResource, an information and resource program for cancer patients. A
limited selection of Spanish language publications is available.
|
Cancer Care, Inc., National Office
275 Seventh Avenue
New York, NY 10001
Tel: 1-800-813-HOPE (1-800-813-4673)
212-221-3300 (Administration)
http://www.cancercare.org
e-mail: info@cancercare.org |
Cancer Care is a national nonprofit agency that offers free
support, information, financial assistance, and practical help to people with
cancer and their loved ones. Services are provided by oncology social workers
and are available in person, over the telephone, and through the agency's Web
site. Cancer Care's reach also extends to professionals--providing education,
information, and assistance. A section of the Cancer Care Web site and some
publications are available in Spanish, and staff can respond to calls and
e-mails in Spanish.
|
Cancer Hope Network
Two North Road, Suite A
Chester, NJ 07930
Tel: 1-877-HOPENET (1-877-467-3638)
http://www.cancerhopenetwork.org
e-mail: info@cancerhopenetwork.org |
The Cancer Hope Network provides individual support to cancer
patients and their families by matching them with trained volunteers who have
undergone and recovered from a similar cancer experience. Such matches are
based on the type and stage of cancer, treatments used, side effects
experienced, and other factors.
|
Cancer Information and Counseling Line (CICL)
(A service of the AMC Cancer Research Center)
1600 Pierce Street
Denver, CO 80214
Tel: 1-800-525-3777
http://www.amc.org/html/info/h_info_cicl.html
e-mail: cicl@amc.org
|
The CICL, part of the Psychosocial Program of the AMC Cancer
Research Center, is a toll-free telephone service for cancer patients, their
family members and friends, cancer survivors, and the general public.
Professional counselors provide up-to-date medical information, emotional
support through short-term counseling, and resource referrals to callers
nationwide between the hours of 8:30 a.m. and 5:00 p.m., Mountain time.
Individuals may also submit questions about cancer and request resources via
e-mail.
|
Cancer Research Foundation of America
1600 Duke Street, Suite 110
Alexandria, VA 22314
Tel: 1-800-227-CRFA (1-800-227-2732)
http://www.preventcancer.org
|
The Cancer Research Foundation of America seeks to prevent cancer
by funding research and providing educational materials on early detection and
nutrition.
|
Gilda's Club® Worldwide
322 Eighth Avenue, Suite 1402
New York, NY 10001
Tel: 212-305-1200
http://www.gildasclub.org
e-mail: info@gildasclub.org
|
Gilda's Clubs provide social and emotional support to cancer
patients, their families, and friends. Lectures, workshops, networking groups,
special events, and a children's program are available.
|
Patient Advocate Foundation (PAF)
753 Thimble Shoals Boulevard, Suite B
Newport News, VA 23606
Tel: 1-800-532-5274
http://www.patientadvocate.org
e-mail: help@patientadvocate.org
|
PAF provides education, legal counseling, and referrals for cancer patients and
survivors concerning managed care, insurance, financial issues, job
discrimination, and debt crisis matters.
|
R. A. Bloch Cancer Foundation, Inc.
4435 Main Street, Suite 500
Kansas City, MO 64111
Tel: 816-WE-BUILD (816-932-8453)
1-800-433-0464
http://www.blochcancer.org
e-mail: hotline@hrblock.com
|
The R. A. Bloch Cancer Foundation matches newly diagnosed cancer
patients with trained, home-based volunteers who have been treated for the same
type of cancer. It also distributes informational materials, including a
multidisciplinary list of institutions that offer second opinions. Information
is available in Spanish.
|
Vital Options® and The Group Room® Cancer Radio Talk
Show
PO Box 19233
Encino, CA 91416-9233
Tel: 1-800-GRP-ROOM (1-800-477-7666)
818-508-5657 (local)
http://www.vitaloptions.org
e-mail: geninfo@vitaloptions.org
|
The mission of Vital Options® is to use communications
technology to reach people dealing with cancer. This organization holds a
weekly syndicated call-in cancer radio talk show called The Group Room®,
which provides a forum for patients, long-term survivors, family members,
physicians, and therapists to discuss cancer issues. Listeners can participate
in the show during its broadcast every Sunday from 4:00 p.m. to 6:00 p.m.,
Eastern time, by calling either of the telephone numbers. A live Web simulcast
of The Group Room® can be heard by logging on to the Vital Options® Web
site. |
The Wellness Community
35 East Seventh Street, Suite 412
Cincinnati, OH 45202
Tel: 1-888-793-WELL (1-888-793-9355)
http://www.thewellnesscommunity.org
e-mail: help@wellness-community.org
|
The Wellness Community provides free psychological and emotional
support to cancer patients and their families. It offers support groups
facilitated by licensed therapists, stress reduction and cancer education
workshops, nutrition guidance, exercise sessions, and social events.
|
Bone Marrow Donors/Recipients
|
Contact Information |
Description |
National Bone Marrow Transplant Link (nbmtLink)
20411 West 12 Mile Road, Suite 108
Southfield, MI 48076
Tel: 1-800-546-5268
http://www.nbmtlink.org
|
The nbmtLink motto is "A Second Chance at Life is Our Priority."
The nbmtLink operates a 24-hour, toll-free number and provides peer support to
bone marrow transplant (BMT) patients and their families. It serves as an
information center for prospective BMT patients as well as a resource for
health professionals. Educational publications, brochures, and videos are
available. Staff can respond to calls in Spanish. |
National Marrow Donor Program® (NMDP)
3433 Broadway Street, NE, Suite 500
Minneapolis, MN 55413
Tel: 1-800-MARROW-2 (1-800-627-7692)
1-888-999-6743 (Office of Patient Advocacy)
http://www.marrow.org
|
NMDP, which is funded by the Federal Government, was created to
improve the effectiveness of the search for bone marrow donors. It keeps a
registry of potential bone marrow donors and provides free information on bone
marrow transplantation, peripheral blood stem cell transplant, and unrelated
donor stem cell transplant, including the use of umbilical cord blood. NMDP's
Office of Patient Advocacy assists transplant patients and their physicians
through the donor search-andtransplant process by providing information,
referrals, support, and advocacy.
|
Hospice
|
Contact Information |
Description |
HOSPICELINK
Three Unity Square
PO Box 98
Machiasport, ME 04655-0098
Tel: 1-800-331-1620
http://www.hospiceworld.org
|
HOSPICELINK helps patients and their families find support services in their
communities. It offers information about hospice and palliative care and can
refer cancer patients and their families to local hospice and palliative care
programs.
|
National Hospice and Palliative Care Organization (NHPCO)
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
Tel: 1-800-658-8898 (Helpline)
http://www.nhpco.org
e-mail: info@nhpco.org
|
The NHPCO is an association of programs that provide hospice and
palliative care. It offers discussion groups, publications, information about
how to find a hospice, and information about the financial aspects of hospice.
Some Spanish-language publications are available, and staff are able to answer
calls in Spanish.
|
Lymphedema
|
Contact Information |
Description |
National Lymphedema Network (NLN)
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612-2138
Tel: 1-800-541-3259
http://www.lymphnet.org
e-mail: nln@lymphnet.org |
NLN provides 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. It provides a
toll-free support hotline; a referral service to lymphedema treatment centers
and health care professionals; a quarterly newsletter with information about
medical and scientific developments; support groups; pen pals; educational
courses for health care professionals and patients; and a computer database.
Some Spanish-language materials are available.
|
Ostomy
|
Contact Information |
Description |
United Ostomy Association, Inc.
19772 MacArthur Boulevard, Suite 200
Irvine, CA 92612-2405
Tel: 1-800-826-0826
(6:30 a.m.-4:30 p.m., Pacific time)
http://www.uoa.org
e-mail: uoa@deltanet.com
|
The United Ostomy Association helps ostomy patients through mutual
aid and emotional support. It provides information to patients and the public
and sends volunteers to visit new ostomy patients.
|
Survivorship
|
Contact Information |
Description |
Lance Armstrong Foundation
PO Box 161150
Austin, TX 78716-1150
Tel: 512-236-8820
http://www.laf.org
|
The Lance Armstrong Foundation (LAF) seeks to enhance the quality
of life for those living with, through, and beyond cancer. Founded in 1997 by
cancer survivor and champion cyclist Lance Armstrong, the LAF's mission is to
enhance the quality of survival of those diagnosed with cancer. LAF seeks to
promote the optimal physical, psychological, and social recovery and care of
cancer survivors and their loved ones. The Foundation focuses its activities in
the following areas: survivor services and support, groundbreaking survivorship
programs, and medical and scientific research grants.
|
National Coalition for Cancer Survivorship (NCCS)
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-5600
Tel: 1-877-NCCS-YES (1-877-622-7937)
http://www.canceradvocacy.org
e-mail: info@canceradvocacy.org |
NCCS is a network of groups and individuals that offer support to
cancer survivors and their loved ones. It provides information and resources on
cancer support, advocacy, and quality-of-life issues. A section of the NCCS Web
site and a limited selection of publications are available in Spanish.
|
Bladder and Urologic Cancer
|
Contact Information |
Description |
American Foundation for Urologic Disease
(AFUD)
1128 North Charles Street
Baltimore, MD 21201
Tel: 1-800-242-2383
http://www.afud.org
e-mail: admin@afud.org
|
AFUD supports research; provides education to patients, the general
public, and health professionals; and offers patient support services for those
who have or may be at risk for a urologic disease or disorder. It provides
information on urologic disease and dysfunctions, including prostate cancer
treatment options, bladder health, and sexual function. AFUD also offers
prostate cancer support groups through its Prostate Cancer Network. Some
Spanish-language publications are available.
|
Bladder Cancer WebCafe
http://blcwebcafe.org
|
Bladder Cancer WebCafe is an online community for bladder cancer
patients and those who care for them. It discusses treatment options,
chemoprevention guidelines, survivor stories, a support group, and more.
|
Brain Cancer
|
Contact Information |
Description |
American Brain Tumor Association (ABTA)
2720 River Road, Suite 146
Des Plaines, IL 60018
Tel: 1-800-886-ABTA (1-800-886-2282)
http://www.abta.org
e-mail: info@abta.org
|
The ABTA funds brain tumor research and provides information to
help patients make educated decisions about their health care. The ABTA offers
printed materials about research on and treatment of brain tumors and provides
listings of physicians, treatment facilities, and support groups throughout the
country. A limited selection of Spanish-language publications is available.
|
The Brain Tumor Society
124 Watertown Street, Suite 3-H
Watertown, MA 02472
Tel: 1-800-770-TBTS (1-800-770-8287)
http://www.tbts.org
e-mail: info@tbts.org
|
The Brain Tumor Society provides information about brain tumors and related
conditions for patients and their families. It offers a patient/family
telephone network, educational publications, funding for research projects, and
access to support groups for patients.
|
Musella Foundation-Clinical Trials and Noteworthy Treatments for
Brain Tumors
1100 Peninsula Boulevard
Hewlett, NY 11557
Tel: 516-295-4740
http://www.virtualtrials.org
e-mail: musella@virtualtrials.com
|
This Web site, maintained by the Musella Foundation, offers extensive treatment
and clinical trial information for brain tumors.
|
National Brain Tumor Foundation (NBTF)
414 Thirteenth Street, Suite 700
Oakland, CA 94612-2603
Tel: 1-800-934-CURE (1-800-934-2873)
http://www.braintumor.org
e-mail: nbtf@braintumor.org
|
NBTF provides patients and their families with information on how
to cope with brain tumors. This organization conducts national and regional
conferences, publishes printed materials for patients and family members,
provides access to a national network of patient support groups, and assists in
answering patient inquiries. NBTF also awards grants to fund research. Staff
are available to answer calls in Spanish, and some Spanish-language
publications are available.
|
Breast Cancer
|
Contact Information |
Description |
Breast Cancer Network of Strength
212 West Van Buren Street
Chicago, IL 60607-3908
Tel: 1-800-221-2141 (English)
1-800-986-9505 (Spanish)
http://www.networkofstrength.org |
Breast Cancer Network of Strength, formerly known as Y-ME National Breast Cancer Organization®, ensures through information, empowerment, and peer support that no one faces breast cancer alone. The organization has affiliates throughout the United States. YourShoes, the organization's peer support services, includes the 24/7 breast cancer support center for telephone conversations; match programs; support via e-mail; a monthly teleconference; and survivor-facilitated support groups. Breast Cancer Network of Strength's newsletters, other publications, and Web site provide information and support to those touched by breast cancer. Network of Strength Advocacy works to increase breast cancer research funding, supports breast cancer-related clinical studies, and ensures quality health care for all. A section of the Web site and publications are available in Spanish, Chinese, Korean, Tagalog, Russian, and Vietnamese.
|
Community Breast Health Project
545 Bryant Street
Palo Alto, CA 94301
Tel: 650-326-6686
http://www-med.stanford.edu/CBHP
e-mail: info@cbhp.org
|
This Web site offers breast cancer information to patients and survivors of
breast cancer. It includes advice as well as links to other sites that have
breast cancer information.
|
ENCOREplus®
YWCA of the USA Office of Women's Health Advocacy
1015 18th Street, NW, Suite 700
Washington, DC 20036
Tel: 1-800-95E-PLUS (1-800-953-7587) http://www.ywca.org
e-mail: cgould@ywca.org
|
ENCOREplus® is the YWCA's discussion and exercise program for
women who have had breast cancer surgery. It is designed to help restore
physical strength and emotional well-being. A local branch of the YWCA, listed
in the phone book, can provide more information about ENCOREplus®.
|
Inflammatory Breast Cancer Research Foundation
PO Box 90117
Anchorage, AK 99509
Tel: 1-877-786-7422
http://www.ibcresearch.org
e-mail: librarian@ibcresearch.org |
This Web site is primarily dedicated to the advancement of research
on inflammatory breast cancer.
|
Living Beyond Breast Cancer (LBBC)
10 East Athens Avenue, Suite 204
Ardmore, PA 19003
Tel: 610-645-4567
Fax: 610-645-4573
http://www.lbbc.org
e-mail: mail@lbbc.org
|
LBBC is a nonprofit educational organization committed to
empowering all women affected by breast cancer to live as long as possible with
the best quality of life. Programs include semiannual large-scale educational
conferences, a quarterly educational newsletter, outreach to medically
underserved women, a consumerfocused educational booklet, a library and
resource center, the Young Survivors group, the Survivors' Helpline, and a Web
site. These resources help women and families affected by breast cancer take an
active role in their ongoing recovery from the disease regardless of
educational background, social support, or financial resources.
|
National Alliance of Breast Cancer Organizations (NABCO)
9 East 37th Street, 10th Floor
New York, NY 10016
Tel: 1-888-80-NABCO (1-888-806-2226)
http://www.nabco.org
e-mail: NABCOinfo@aol.com
|
NABCO is a nonprofit organization that provides information about
breast cancer and acts as an advocate for the legislative concerns of breast
cancer patients and survivors. NABCO maintains a list, organized by state, of
phone numbers for support groups.
|
National Asian Women's Health Organization (NAWHO)
250 Montgomery Street, Suite 900
San Francisco, CA 94104
Tel: 415-989-9747
http://www.nawho.org
e-mail: nawho@nawho.org
|
NAWHO is working to improve the health status of Asian women and
families through research, education, leadership, and public policy programs.
It has resources for Asian women in English, Cantonese, Laotian, Vietnamese,
and Korean. Publications on subjects such as reproductive rights, breast and
cervical cancer, and tobacco control are available.
|
National Breast Cancer Coalition
1707 L Street NW, Suite 1060
Washington, DC 20036
Tel: 1-800-622-2838
http://www.natlbcc.org |
This organization focuses on three main goals in the fight against
breast cancer: increasing cancer research, increasing access for all women to
quality treatment and clinical trials, and increasing the influence of women
living with breast cancer.
|
Susan G. Komen Breast Cancer Foundation
5005 LBJ Freeway, Suite 250
Dallas, TX 75244
Tel: 1-800-462-9273
http://www.komen.org
e-mail: helpline@komen.org
|
The Komen Foundation fights to eradicate breast cancer by funding
national grants, education, and screening and treatment projects in communities
throughout the United States.
|
The Witness Project®
Arkansas Cancer Research Center
Cancer Education
4301 West Markham, Slot 629 A
Little Rock, AR 72205
Tel: 1-800-275-1183
Fax: 501-686-6479
http://www.acrc.uams.edu/Outreach/WitnessProject |
The Witness Project® is a culturally competent, community-based
cancer education program through which cancer survivors and lay health advisors
increase awareness, knowledge, screening, and early detection behaviors in
rural and lower-income African-American populations in an effort to reduce
mortality and morbidity from breast cancer.
|
Cancers of the Ovary, Uterus,
Vulva, and Cervix (Gynecologic Cancers)
|
Contact Information |
Description |
American College of Obstetricians and Gynecologists
409 12th Street, SW
PO Box 96920
Washington, DC 20090-6920
Tel: 202-638-5577
http://www.acog.org
|
This Web site lists detailed information for patients on cancers of the ovary,
uterus, vulva, and cervix.
|
EyesOnThePrize.Org
http://www.eyesontheprize.org
e-mail: pr@eyesontheprize.org
|
This site offers a Web community created to provide information,
shared experience, resources, support, and company for women with gynecologic
cancers. |
National Asian Women's Health Organization (NAWHO)
250 Montgomery Street, Suite 900
San Francisco, CA 94104
Tel: 415-989-9747
http://www.nawho.org
e-mail: nawho@nawho.org
|
NAWHO is working to improve the health status of Asian women and
families through research, education, leadership, and public policy programs.
It has resources for Asian women in English, Cantonese, Laotian, Vietnamese,
and Korean. Publications on subjects such as reproductive rights, breast and
cervical cancer, and tobacco control are available.
|
National Cervical Cancer Coalition (NCCC)
16501 Sherman Way, Suite 110
Van Nuys, CA 91406
Tel: 1-800-685-5531
http://www.nccc-online.org
e-mail: acameren@nccc-online.org |
NCCC focuses on giving support to women and their family members on
issues related to cervical cancer disease, screening, treatment, and new
research.
|
National Ovarian Cancer Coalition (NOCC)
500 Northeast Spanish River Boulevard, Suite 14
Boca Raton, FL 33431
Tel: 1-888-OVARIAN (1-888-682-7426)
http://www.ovarian.org
e-mail: NOCC@ovarian.org
|
NOCC raises awareness about ovarian cancer and promotes education
about this disease. It has a toll-free telephone number for information,
referral, support, and education about ovarian cancer. NOCC also offers support
groups, a database of gynecologic oncologists searchable by state, and
educational materials. A limited selection of Spanish-language publications is
available.
|
Ovarian Cancer National Alliance (OCNA)
910 17th Street, NW, Suite 413
Washington, DC 20006
Tel: 202-331-1332
http://www.ovariancancer.org
e-mail: ovarian@aol.com |
OCNA works to increase public and professional understanding of
ovarian cancer and to advocate for research to find more effective ways to
diagnose, treat, and cure this disease. The Alliance distributes informational
materials; sponsors an annual advocacy conference for survivors and families;
advocates on the issues of cancer to the ovarian cancer community; and works
with women's groups, seniors, and health professionals to increase awareness of
ovarian cancer.
|
Children's Cancers
|
Contact Information |
Description |
Candlelighters Childhood Cancer Foundation (CCCF)
3910 Warner Street
Kensington, MD 20895
Tel: 1-800-366-CCCF (1-800-366-2223)
http://www.candlelighters.org
e-mail: info@candlelighters.org
|
The CCCF is a nonprofit organization that provides information,
peer support, and advocacy through publications, an information clearinghouse,
and a network of local support groups. A financial aid list is available that
lists organizations to which eligible families may apply for assistance.
|
Children's Hospice International®
2202 Mount Vernon Avenue, Suite 3C
Alexandria, VA 22301
Tel: 1-800-2-4-CHILD (1-800-242-4453)
http://www.chionline.org
e-mail: chiorg@aol.com
|
Children's Hospice International® provides a network of support
for dying children and their families. It serves as a clearinghouse for
research programs and support groups and offers educational materials and
training programs on pain management and the care of seriously ill children.
|
CureSearch
440 East Huntington Drive, Suite 400
PO Box 60012
Arcadia, CA 91066-6012
Tel: 1-800-458-6223
http://www.curesearch.org
e-mail: info@Curesearch.org
|
CureSearch supports research conducted by a network of institutions,
each of which has a team of doctors, scientists, and other specialists with the
special skills required for the diagnosis, treatment, supportive care, and
research on the cancers of infants, children, and young adults. Advocating for
children with cancer and the centers that treat them is also a focus of CureSearch. A limited selection of Spanish language publications is available.
|
National Children's Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
Tel: 1-800-532-6459
http://www.children-cancer.com
e-mail: pfs@children-cancer.com |
The Society provides direct financial assistance and emotional
support to children with cancer and their families.
|
Outlook: Life Beyond Childhood Cancer
University of Wisconsin Medical School UW
Children's Hospital Department of Pediatrics
K4/438 Clinical Science Center 600
Highland Avenue Madison, WI 53792-4672
Tel: 608-263-6200
http://www.outlook-life.org
e-mail: jaamond@factstaff.wisc.edu
|
Outlook is an interactive information and support system for
survivors of childhood cancer and their families.
|
Pediatric Brain Tumor Foundation of the United States
302 Ridgefield Court
Asheville, NC 28806
Tel: 1-800-253-6530
http://www.pbtfus.org
e-mail: pbtfus@pbtfus.org
|
The Foundation seeks to find the cause and cure of brain tumors in
children by supporting medical research, increasing public awareness of the
disease, and aiding in early detection and treatment of childhood brain tumors.
|
STARBRIGHT Foundation
1990 South Bundy Drive, Suite 100
Los Angeles, CA 90025
Tel: 1-800-315-2580
http://www.starbright.org
e-mail: ford@starbright.org
|
The STARBRIGHT Foundation creates projects designed to help seriously ill
children and adolescents cope with the psychosocial and medical challenges they
face. The Foundation produces materials such as interactive educational CD-ROMs
and videos about medical conditions and procedures, provides advice on talking
with a health professional, and deals with other issues related to children and
adolescents who have serious medical conditions. All materials are available to
children, adolescents, and their families free of charge. Staff can respond to
calls in Spanish.
|
Colon/Rectal Cancer
|
Contact Information |
Description |
Colon Cancer Alliance
175 9th Avenue
New York, NY 10011
Tel: 1-877-422-2030
http://www.ccalliance.org
|
This is a patient-centered, colorectal cancer-specific organization that offers
support, education, research, and patient advocacy services.
|
Colorectal Cancer Network
PO Box 182
Kensington, MD 20895-0182
Tel: 301-879-1500
http://www.colorectal-cancer.net
e-mail: ccnetwork@colorectal-cancer.net
|
The Colorectal Cancer Network is a national advocacy group that raises public
awareness about colorectal cancer and provides support services to colorectal
cancer patients and their families, friends, and caregivers. Services include
support groups; an Internet chat room; e-mail listservs for survivors,
caregivers, and advocates; hospital visitation programs; and a "One on One"
service that connects newly diagnosed individuals with long-term survivors. The
Network also provides literature on screening, diagnosis, treatment, and
supportive care for colorectal cancer.
|
Kidney Cancer
|
Contact Information |
Description |
Kidney Cancer Association
1234 Sherman Avenue, Suite 203
Evanston, IL 60202-1375
Tel: 847-332-1051; 1-800-850-9132
http://www.kidneycancerassociation.org
e-mail: office@kidneycancerassociation.org
|
The Kidney Cancer Association supports research, offers printed
materials about the diagnosis and treatment of kidney cancer, sponsors support
groups, and provides physician referral information. |
Leukemia/Lymphoma
|
Contact Information |
Description |
Large Granular Lymphocyte (LGL) Leukemia Registry
H. Lee Moffitt Cancer Center and Research Institute
12902 Magnolia Drive, Suite 3157
Tampa, FL 33162
Tel: 1-800-663-3488
http://www.moffitt.usf.edu/lgl-leukemia/lgl.htm
e-mail: LGLreg@moffitt.usf.edu
|
This registry is part of the Hematologic Malignancies Program at
the H. Lee Moffitt Cancer Center and Research Institute. It collects and
studies information on people with LGL leukemia. It has also established a bank
of blood and tissue samples from people with the disease.
|
The Leukemia and Lymphoma Society (LLS)
1311 Mamaroneck Avenue
White Plains, NY 10605-5221
Tel: 1-800-955-4572
http://www.leukemia-lymphoma.org
e-mail: infocenter@leukemia-lymphoma.org |
The goal of the LLS is to find cures for leukemia, lymphoma,
Hodgkin's disease, and multiple myeloma and to improve quality of life for
patients and their families. The Society supports medical research and provides
health education materials, as well as the following services: patient
financial aid for specified treatment expenses and transportation; family
support groups; First Connection (a professionally supervised peer support
program); referrals; school reentry materials; and public and professional
education. The Society also provides audiotapes in English and some
Spanish-language publications.
|
Lymphoma Information Network
http://www.lymphomainfo.net
|
This site is devoted to providing detailed information for those
with Hodgkin's disease and non-Hodgkin's lymphoma. The site is complemented by
links to other lymphoma sites for patients and physicians.
|
Lymphoma Research Foundation (LRF)
111 Broadway, 19th Floor
New York, NY 10006
Tel: 1-800-235-6848
http://www.lymphoma.org
e-mail: LRF@lymphoma.org
|
LRF administers a research grant program, conducts public policy and
advocacy activities, oversees finance and development, and promotes
professional education.
In addition, LRF funds research and provides educational information on
lymphoma. It offers a helpline for general information on lymphoma, as well as
referrals to other resources, oncologists, clinical trials, and support groups.
A buddy program is available to match newly diagnosed patients with others who
have coped with the disease. Some Spanish-language publications are also
available.
|
Lung Cancer
|
Contact Information |
Description |
Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE)
PO Box 849
Vancouver, WA 98666
Tel: 1-800-298-2436
http://www.alcase.org
e-mail: info@alcase.org
|
ALCASE offers programs designed to help improve the quality of life
for people with lung cancer and their families. Programs include education
about the disease, psychosocial support, and advocacy on issues that concern
lung cancer survivors.
|
It's Time to Focus on Lung Cancer
Tel: 1-877-646-5864
http://www.lungcancer.org |
This Web site is designed to increase awareness of lung cancer and its
increasing impact on women. It includes lung cancer facts, recent news, and
press releases.
|
Multiple Myeloma
|
Contact Information |
Description |
International Myeloma Foundation (IMF)
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607
Tel: 1-800-452-CURE (1-800-452-2873)
http://www.myeloma.org
e-mail: TheIMF@myeloma.org
|
The IMF supports education, treatment, and research for multiple
myeloma. It provides a toll-free hotline, seminars, and educational materials
for patients and their families. Although the IMF does not sponsor support
groups, it does keep a list of other organizations' support groups and provides
information on how to start a support group. A section of the IMF Web site and
some printed materials are available in Spanish.
|
The Multiple Myeloma Research Foundation (MMRF)
11 Forest Street
New Canaan, CT 06840
Tel: 203-972-1250
http://www.multiplemyeloma.org
e-mail: themmrf@themmrf.org |
MMRF supports research grants and professional and patient symposia
on multiple myeloma and related blood cancers. MMRF publishes a quarterly
newsletter and provides referrals and information packets free of charge to
patients and family members.
|
Oral and Head and Neck Cancer
|
Contact Information |
Description |
Support for People with Oral and Head and Neck Cancer, Inc. (SPOHNC)
PO Box 53
Locust Valley, NY 11560-0053
Tel: 1-800-377-0928
http://www.spohnc.org
e-mail: info@spohnc.org
|
SPOHNC is a not-for-profit national organization founded in 1991 to
address the emotional, physical, and humanistic needs of people who have oral
cancer and head and neck cancer. |
Pancreatic Cancer
|
Contact Information |
Description |
Pancreatic Cancer Action Network (PanCAN)
PO Box 1010
Torrance, CA 90505
Tel: 1-877-2-PANCAN (1-877-272-6226)
http://www.pancan.org
e-mail: information@pancan.org
|
PanCAN, a nonprofit advocacy organization, educates health
professionals and the general public about pancreatic cancer to increase
awareness of the disease. PanCAN also advocates for increased funding of
pancreatic cancer research and promotes access to and awareness of the latest
medical advances, support networks, clinical trials, and reimbursement for
care.
|
Prostate Cancer
|
Contact Information |
Description |
American Foundation for Urologic Disease (AFUD)
1128 North Charles Street
Baltimore, MD 21201
Tel: 1-800-242-2383
http://www.afud.org
e-mail: admin@afud.org
|
AFUD supports research; provides education to patients, the general
public, and health professionals; and offers patient support services for those
who have or may be at risk for a urologic disease or disorder. It provides
information on urologic disease and dysfunction including prostate cancer
treatment options, bladder health, and sexual function. AFUD also offers
prostate cancer support groups through its Prostate Cancer Network. Some
Spanish-language publications are available.
|
Prostate Cancer Foundation
1250 Fourth Street, Suite 360
Santa Monica, CA 90401
Tel: 1-800-757-CURE (1-800-757-2873)
http://www.prostatecancerfoundation.org
e-mail: Info@prostatecancerfoundation.org
|
The Prostate Cancer Foundation is a nonprofit organization that provides funding for
research projects to improve methods of diagnosing and treating prostate
cancer. It also offers printed resources for prostate cancer survivors and
their families. The mission of the Prostate Cancer Foundation is to find a cure for prostate cancer.
|
Us Too! International, Inc.
5003 Fairview Avenue
Downers Grove, IL 60515
Tel: 630-795-1002 (in the Chicago area)
1-800-80-US TOO (1-800-808-7866)
http://www.ustoo.org
e-mail: ustoo@ustoo.com |
Us Too! is a prostate cancer support group organization. Goals of
Us Too! are to increase awareness of prostate cancer in the community, educate
men newly diagnosed with prostate cancer, offer support groups, and provide the
latest information about treatment for this disease. A limited selection of
Spanish-language publications is available.
|
Skin Cancer and Melanoma
|
Contact Information |
Description |
Melanoma Education Foundation
7 Jones Road
Peabody, MA 09160
http://skincheck.com
e-mail: MEF@skincheck.org
|
This Web site provides information about melanoma, emphasizing the
importance of monthly self-examination of the skin to detect melanoma while it
is thin and curable.
|
The Melanoma Patients' Information Page
PO Box 38
Cloverdale, CA 95425
http://www.mpip.org
e-mail: admin@mpip.org |
Designed for melanoma patients and melanoma investigators, this Web
site includes published results of clinical trials in chemotherapy, vaccines,
and gene therapy. It also has a database of research abstracts and a bulletin
board for questions and answers.
|
The Melanoma Research Foundation
23704-5 El Toro Road, 206
Lake Forest, CA 92630
Tel: 1-800-673-1290
http://www.melanoma.org/
e-mail: mrf@melanoma.org
|
The Foundation supports medical research for the treatment of melanoma and acts
as a resource for melanoma patients, their families, and friends.
|
The Skin Cancer Foundation
PO Box 561
New York, NY 10156
Tel: 1-800-SKIN-490 (1-800-754-6490)
http://www.skincancer.org
e-mail: info@skincancer.org
|
Major goals of The Skin Cancer Foundation are to increase public
awareness of the importance of taking protective measures against the damaging
rays of the sun and to teach people how to recognize the early signs of skin
cancer. The Foundation conducts public and medical education programs to help
reduce the incidence of skin cancer.
|
Could I now be passed over for a promotion? Can my office make special
accommodations to make it easier for me to do my job now? These are some of the
questions cancer survivors may have when they return to work after treatment.
The Rehabilitation Act of 1973 and the Americans With Disabilities Act (ADA) of
1990 protect people against employment discrimination based on a disability.
These laws often cover cancer survivors.
The resource list below offers some general information and specific resources
to consult for answers.
NOTE: Legal rights change frequently. Check all the material you read to be
sure you are getting accurate and up-to-date information from a reliable
source.
Disability and Discrimination
|
Contact Information |
Description |
Equal Employment Opportunity Commission (EEOC)
1801 L Street, NW
Washington, DC 20507
Tel/TTY: 1-800-669-6820
http://www.eeoc.gov
|
The EEOC is the Federal agency that coordinates the investigation of employment
discrimination. People can bring complaints against employers if they believe
they have experienced discrimination.
|
Federal Laws Prohibiting Job Discrimination: Questions & Answers
http://www.eeoc.gov/facts/qanda.html
|
This fact sheet can answer your questions about who is protected by
the ADA, workplace accommodation, and other important information.
|
The ADA: Your Responsibilities as an Employer
http://www.eeoc.gov/facts/ada17.html |
This fact sheet describes the responsibilities of an employer
toward his or her employees with disabilities.
|
U.S. Department of Justice (DOJ)
950 Pennsylvania Avenue, NW
Washington, DC 20530-0001
Tel: 1-800-514-0301
http://www.usdoj.gov |
The DOJ provides information to assist persons with disabilities
with legal issues, questions about the ADA, mediation services, and other
employment issues.
|
U.S. Department of Labor (DOL)
Office of Disability Employment Policy (ODEP)
1331 F Street NW, Suite 300
Washington, DC 20004
Tel: 202-376-6200
TTY: 202-376-6205
http://www.dol.gov/odep/welcome.html
|
This agency provides fact sheets on a wide variety of disability issues,
including discrimination, workplace accommodation, and legal rights.
|
Job Accommodation Network
West Virginia University
PO Box 6080
Morgantown, WV 26506-6080
Tel/TTY:1-800-526-7234
http://www.jan.wvu.edu
|
This service of the U.S. Department of Labor offers ideas on how to
change a workplace to make it easier for an employee with a disability to do
his or her job. |
Legal Assistance
|
Contact Information |
Description |
National Employment Lawyers Association (NELA)
44 Montgomery Street, Suite 2080
San Francisco, CA 94104
Tel: 415-296-7629
http://www.nela.org |
NELA can help find a lawyer experienced in job discrimination
cases. |
Local Bar Association
Check your local phone book.
|
Many local bar associations provide information about how to find a
lawyer and learn about legal assistance in your local area.
|
Legal Aid or Legal Services Group
Check your local phone book.
|
Many cities have legal aid groups that help provide free or
low-cost legal services. |
Other Legal Information
|
Contact Information |
Description |
American Cancer Society (ACS)
1599 Clifton Road, NE
Atlanta, GA 30329-4251
Tel: 1-800-ACS-2345 (1-800-227-2345)
http://www.cancer.org
|
Your can contact ACS for legal information.
|
Cancer Care, Inc., National Office
275 Seventh Avenue
New York, NY 10001
Tel: 1-800-813-HOPE (1-800-813-4673)
http://www.cancercare.org
e-mail: info@cancercare.org |
Cancer Care has information on a wide range of cancer topics,
including employment issues.
|
National Coalition for Cancer Survivorship (NCCS)
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-5600
Tel: 1-877-NCCS-YES (1-877-622-7937)
http://www.canceradvocacy.org
e-mail: info@canceradvocacy.org
|
The NCCS provides cancer information, including a book titled Working
It Out: Your Employment Rights as a Cancer Survivor. |
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