National Organizations That Offer
Services to People With Cancer and Their Families
People with cancer
and their families sometimes need assistance coping with the emotional
as well as the practical aspects of their disease. This fact sheet
includes some of the national nonprofit organizations that provide this
type of support. It is not intended to be a comprehensive listing of
all organizations that offer these services in the United States, nor
does inclusion of any particular organization imply endorsement by the National
Cancer Institute (NCI), the National
Institutes of Health, or the Department of Health and Human
Services. The intent of this fact sheet is to provide information
useful to individuals nationally. For that reason, it does not include
the many local groups that offer valuable assistance to patients and
their families in individual states or cities.
Criteria for inclusion of
organizations in this fact sheet
The national, nonprofit organizations
included in this fact sheet, like NCI, provide services and/or
information to cancer patients and their families. They also affirm the
importance of scientific research and investigations of new approaches
to cancer detection, treatment, and prevention.
------------------------------------------------------------------------------------
|
Organization:
|
American Brain Tumor
Association (ABTA) |
|
Address:
|
2720 River Road
Des Plaines, IL 60018 |
|
Telephone:
|
847–827–9910
1–800–886–2282
(1–800–886–ABTA) |
|
E-mail:
|
info@abta.org
|
|
Internet Web site:
|
http://www.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 the research 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.
------------------------------------------------------------------------------------
|
Organization:
|
American Cancer
Society (ACS) |
|
Address:
|
1599 Clifton Road, NE.
Atlanta, GA 30329–4251 |
|
Telephone:
|
404–320–3333
1–800–227–2345
(1–800–ACS–2345) |
|
Internet Web site:
|
http://www.cancer.org
|
The ACS is a voluntary organization that
offers a variety of services to patients and their families. The ACS
also supports research, provides printed materials, and conducts
educational programs. Staff can accept calls and distribute
publications in Spanish. A local ACS unit may be listed in the white
pages of the telephone directory under “American Cancer
Society.”
American Cancer Society (ACS)
Supported Programs:
- Cancer Survivors Network®
(http://www.acscsn.org)
This is both a telephone and Web-based service for cancer survivors,
their families, caregivers, and friends. The telephone component
(1–877–333–HOPE) provides survivors and
families access to pre-recorded discussions. The Web-based component
offers live online chat sessions, virtual support groups, pre-recorded
talk shows, and personal stories.
- I Can Cope
I Can Cope is a patient education program that is designed to help
patients, families, and friends cope with the day-to-day issues of
living with cancer.
- Look Good. . .Feel Better®
(http://www.lookgoodfeelbetter.org)
This program was developed by the Cosmetic, Toiletry, and Fragrance
Association Foundation in cooperation with ACS and the National
Cosmetology Association. It focuses on techniques that can help people
undergoing cancer treatment improve their appearance. The entire
program is also available in Spanish.
- Man to Man
(http://www.cancer.org/docroot/ESN/content/ESN_3_1X_Man_to_Man_36.asp?sitearea=SHR)
The Man to Man program helps men cope with prostate
cancer by providing community-based education and support to
patients and their family members. In addition, Man to Man encourages
men and health care professionals to actively consider screening
for prostate cancer appropriate to each man’s age and risk
for the disease. A major part of the program is the self-help and/or
support group. Volunteers organize free monthly meetings where speakers
and participants learn about and discuss information about prostate
cancer, treatment, side
effects, and how to cope with the disease and its treatment.
- Reach to Recovery
The Reach to Recovery Program is a rehabilitation
program for men and women who have or have had breast
cancer. The program helps breast cancer patients meet the
physical, emotional, and cosmetic needs related to their disease and
its treatment.
------------------------------------------------------------------------------------
|
Organization:
|
American Institute
for Cancer Research (AICR) |
|
Address:
|
1759 R Street, NW.
Washington, DC 20009 |
|
Telephone:
|
202–328–7744
1–800–843–8114 |
|
E-mail:
|
aicrweb@aicr.org |
|
Internet Web site:
|
http://www.aicr.org |
The AICR provides information about cancer prevention,
particularly through diet
and nutrition.
They offer a toll-free nutrition hotline and funding of research
grants. The AICR also has a wide array of consumer and health
professional brochures, plus 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.
------------------------------------------------------------------------------------
|
Organization:
|
American Urological
Association Foundation (AUA) |
|
Address:
|
Suite 410
1000 Corporate Boulevard
Linthicum, MD 21090 |
|
Telephone:
|
410–689–3990
1–800–828–7866 |
|
E-mail:
|
Available through the Web site |
|
Internet Web site:
|
http://www.auafoundation.org |
The AUA 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.
They provide information on urologic disease and dysfunctions,
including prostate cancer treatment options, bladder
health, and sexual function. They also offer prostate cancer support
groups (Prostate Cancer Network). Some Spanish-language publications
are available.
------------------------------------------------------------------------------------
|
Organization:
|
Bladder Cancer
Advocacy Network (BCAN) |
|
Address:
|
Post Office Box 341105
Bethesda, MD 20827 |
|
Telephone:
|
301–469–6865 |
|
Fax:
|
301–469–7526 |
|
E-mail:
|
dzquale@bcan.org |
|
Internet Web site:
|
http://www.bcan.org |
BCAN serves bladder cancer survivors,
caregivers, and families. BCAN is the first national patient-based
advocacy organization for bladder cancer. BCAN’s mission is
to raise awareness of bladder cancer within the general public and
medical community; to advocate for additional government and private
funding for research programs directed toward diagnosis,
treatment, and cure
for bladder cancer; and to work with and provide financial assistance
and grants to individuals, corporations, health and medical
institutions, and associations for bladder cancer research. The BCAN
Web site provides bladder cancer information, clinical trial listings
for bladder cancer, and a quarterly online newsletter. BCAN also offers
a weekly online chat room where survivors can share their experiences.
------------------------------------------------------------------------------------
|
Organization:
|
Brain Tumor Society |
|
Address:
|
Suite 3–H
124 Watertown Street
Watertown, MA 02472 |
|
Telephone:
|
617–924–9997
1–800–770–8287
(1–800–770–TBTS) |
|
E-mail:
|
info@tbts.org |
|
Internet Web site:
|
http://www.tbts.org |
The Brain Tumor Society provides
information about brain tumors and related conditions for patients and
their families. They offer a patient/family telephone network,
educational publications, funding for research projects, and access to
support groups for patients.
------------------------------------------------------------------------------------
C3™ pushes for research to
improve screening, diagnosis, and treatment of colorectal cancer; for
policy decisions that make the most effective colorectal cancer
prevention and treatment available to all; and for increased awareness
that colorectal cancer is preventable, treatable, and beatable. C3
provides information to colorectal cancer patients about clinical
trials and treatment options, colorectal cancer news and
events updates, and advocacy.
------------------------------------------------------------------------------------
|
Organization:
|
CancerCare,
Inc. |
|
Address:
|
National Office
275 Seventh Avenue
New York, NY 10001 |
|
Telephone:
|
212–712–8080
1–800–813–4673
(1–800–813–HOPE)
212–712–8400 (administration) |
|
E-mail:
|
info@cancercare.org |
|
Internet Web site:
|
http://www.cancercare.org |
CancerCare 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. CancerCare’s
reach also extends to professionals—providing education,
information, and assistance. A section of the CancerCare
Web site and some publications are available in Spanish, and staff can
respond to calls and e-mails in Spanish.
CancerCare also
operates the AVONCares Program for
Medically Underserved Women, which provides financial
assistance to low-income, under- and uninsured, underserved women
throughout the country who need supportive services (transportation,
child care, and home care) related to the treatment of breast and cervical
cancers.
------------------------------------------------------------------------------------
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.
------------------------------------------------------------------------------------
|
Organization:
|
Cancer Information
and Counseling Line (CICL) (a service of the AMC Cancer Research Center) |
|
Address:
|
1600 Pierce Street
Denver, CO 80214 |
|
Telephone:
|
1–800–525–3777 |
|
E-mail:
|
ciclhelp@amc.org |
|
Internet Web site:
|
http://www.amc.org/contact.html |
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 Standard Time, Monday through Friday.
Individuals may also submit questions about cancer and request
resources via e-mail.
------------------------------------------------------------------------------------
The Cancer Project provides comprehensive
educational materials, conducts clinical research studies, and
publicizes the value of a healthy diet in cancer prevention and
survival. A limited selection of Spanish-language publications is
available.
------------------------------------------------------------------------------------
The Cancer Research and Prevention
Foundation seeks to prevent cancer by funding research and providing
educational materials on early detection and nutrition.
------------------------------------------------------------------------------------
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.
------------------------------------------------------------------------------------
|
Organization:
|
Children’s
Brain Tumor Foundation (CBTF) |
|
Address:
|
Suite 1301
274 Madison Avenue
New York, NY 10016 |
|
Telephone:
|
212–448–9494
1–866–228–4673
(1–866–228–HOPE) |
|
E-mail:
|
info@cbtf.org |
|
Internet Web site:
|
http://www.cbtf.org |
The CBTF is a nonprofit organization that
funds research and provides support, education, and advocacy for
children with brain and spinal
cord tumors
and their families. It also provides educational materials (including a
Spanish-language publication) and cosponsors conferences and seminars
for families, survivors, and health care professionals that offer the
latest information about research, treatments, and strategies for
living. Through CBTF’s Parent-to-Parent Network, families
share their experiences with others in similar situations.
------------------------------------------------------------------------------------
|
Organization:
|
Children’s
Hospice International® |
|
Address:
|
Suite 230
901 North Pitt Street
Alexandria, VA 22314 |
|
Telephone:
|
703–684–0330
1–800–242–4453
(1–800–2–4–CHILD) |
|
E-mail:
|
chiorg@aol.com |
|
Internet Web site:
|
http://www.chionline.org |
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.
------------------------------------------------------------------------------------
|
Organization:
|
Colon Cancer Alliance
(CCA) |
|
Address:
|
175 Ninth Avenue
New York, NY 10011 |
|
Telephone:
|
212–627–7451
(main office)
1–877–422–2030 (helpline) |
|
E-mail:
|
info@ccalliance.org |
|
Internet Web site:
|
http://www.ccalliance.org |
The CCA is an organization of colon
and rectal
cancer survivors, their families, caregivers, and the medical
community. The Alliance provides patient support and public education,
supports research, and advocates for the needs of cancer patients and
their families. The CCA offers information including brochures and
booklets, a newsletter, a toll-free helpline, and weekly online chats.
It also offers the CCA Buddies Network, which matches survivors and
caregivers with others in a similar situation for one-on-one emotional
support. The CCA has volunteers who speak Spanish.
------------------------------------------------------------------------------------
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.
------------------------------------------------------------------------------------
CureSearch is a partnership between the
Children’s Oncology Group and the National Childhood Cancer
Foundation. CureSearch provides treatment information and support
resources for patients, families, and health professionals. A
searchable Resource Directory is available on their Web site (http://www.curesearch.org/resources/)
that lists local, national, and international organizations that offer
resources for helping community members, parents, and children dealing
with childhood cancer. Users enter in their ZIP Code on the Web site to
locate local and regional organizations.
------------------------------------------------------------------------------------
|
Organization:
|
ENCOREPlus® |
|
Address:
|
YWCA of the USA
Office of Women’s Health Advocacy
Suite 700
1015 18th Street, NW.
Washington, DC 20036 |
|
Telephone:
|
202–467–0801
1–800–953–7587
(1–800–95E–PLUS) |
|
E-mail:
|
cgould@ywca.org |
|
Internet Web site:
|
http://www.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 telephone
directory, can provide more information about ENCOREPlus.
------------------------------------------------------------------------------------
Fertile Hope is a national organization
that provides reproductive information, support, and hope to cancer
patients whose medical treatments present the risk of infertility.
They also offer patients financial assistance options for fertility
preservation.
------------------------------------------------------------------------------------
Gilda’s Club Worldwide works with
communities to start and maintain local Gilda’s Clubs, which
provide social and emotional support to cancer patients, their
families, and friends. Lectures, workshops, support and networking
groups, special events, and children’s programs are offered.
Services are available in Spanish.
------------------------------------------------------------------------------------
The Hospice Education Institute serves a
wide range of individuals and organizations interested in improving and
expanding hospice and palliative
care throughout the United States and around the world. The
Institute works to inform, educate, and support people seeking or
providing care for the dying and the bereaved. HOSPICELINK, a service
of the Institute, maintains a computerized database and up-to-date
directory of all hospice and palliative care programs in the United
States. HOSPICELINK helps patients and their families find hospice and
palliative care programs, and provides general information about the
principles and practices of good hospice and palliative care.
------------------------------------------------------------------------------------
|
Organization:
|
International
Association of Laryngectomees (IAL) |
|
Address:
|
Post Office Box 691060
Stockton, CA 95269–1060 |
|
Telephone:
|
1–866–425–3678
(1–866–IAL–FORU) |
|
Fax:
|
209–472–0516 |
|
E-mail:
|
ialhq@larynxlink.com |
|
Internet Web site:
|
http://www.larynxlink.com |
The IAL assists people who have lost their
voice as a result of cancer. It provides information on the skills
needed by laryngectomees
and works toward total rehabilitation of patients.
------------------------------------------------------------------------------------
|
Organization:
|
International Myeloma
Foundation (IMF) |
|
Address:
|
Suite 206
12650 Riverside Drive
North Hollywood, CA 91607–3421 |
|
Telephone:
|
818–487–7455
1–800–452–2873
(1–800–452–CURE) |
|
E-mail:
|
TheIMF@myeloma.org |
|
Internet Web site:
|
http://www.myeloma.org |
The IMF supports education, treatment, and
research for multiple
myeloma. They provide a toll-free hotline, seminars, and
educational materials for patients and their families. Although the IMF
does not sponsor support groups, they do keep a list of other
organizations’ support groups and provide information on how
to start a support group. A section of the IMF Web site and some
printed materials are available in Spanish.
------------------------------------------------------------------------------------
|
Organization:
|
International
Waldenstrom’s Macroglobulinemia Foundation (IWMF)
|
|
Address:
|
3932 D Swift Road
Sarasota, FL 34231 |
|
Telephone:
|
941–927–4963 |
|
E-mail:
|
info@iwmf.com |
|
Internet Web site:
|
http://www.iwmf.com |
The IWMF provides encouragement and support
to people with Waldenstrom’s macroglobulinemia
(WM) and their families, and works to increase awareness of issues
related to WM. The IWMF also encourages and supports increased research
toward finding more effective treatments and ultimately a cure.
The IWMF offers publications, including a quarterly newsletter, The
IWMF Torch, and bulletins. Through its
Internet Talklist, regional
support groups, and telephone Lifeline Project, the Foundation also
helps people with WM contact others with this disease. People may also
participate in the IWMF’s annual Educational Forum to hear
prominent researchers and other speakers, and to share their
experiences with other participants.
------------------------------------------------------------------------------------
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.
------------------------------------------------------------------------------------
|
Organization:
|
Lance Armstrong
Foundation (LAF) |
|
Address:
|
Post Office Box 161150
Austin, TX 78716–1150 |
|
Telephone:
|
512–236–8820 |
|
Internet Web site:
|
http://www.livestrong.org |
The LAF, a nonprofit organization founded
by cancer survivor and cyclist Lance Armstrong, provides resources and
support services to people diagnosed with cancer and their families.
The LAF’s services include Cycle of Hope, a national cancer
education campaign for people with cancer and those at risk for
developing the disease, and the Cancer Profiler, a free interactive
treatment decision support tool. The LAF also provides scientific and
research grants for the better understanding of cancer and cancer survivorship.
------------------------------------------------------------------------------------
The goal of The Leukemia
and Lymphoma
Society is to find cures for leukemia, lymphoma, Hodgkin’s
disease, myelodysplastic/myeloproliferative
disorders, and multiple myeloma and to improve the quality
of life of patients and their families. The Society supports
medical research and provides the following services: health education
materials, patient financial aid for specified treatment expenses and
transportation, family support groups, First Connection
(a professionally supervised peer support program), referrals, school
re-entry materials, and public and professional education. The Society
also provides audiotapes in English and some Spanish-language
publications.
------------------------------------------------------------------------------------
|
Organization:
|
Living Beyond Breast
Cancer (LBBC) |
|
Address:
|
Suite 204
10 East Athens Avenue
Ardmore, PA 19003 |
|
Telephone:
|
610–645–4567
1–888–753–5222
(1–888–753–LBBC) (Survivors’
Helpline) |
|
E-mail:
|
mail@lbbc.org |
|
Internet Web site:
|
http://www.lbbc.org |
The LBBC is an educational organization
that aims to empower women living with breast cancer to live as long as
possible with the best quality of life. The LBBC offers an interactive
message board and information about upcoming conferences and
teleconferences on its Web site. In addition, the organization has a
toll-free Survivors’ Helpline, a Young Survivors’
Network for women diagnosed with breast cancer who are age 45 or
younger, and outreach programs for medically underserved communities.
The LBBC also offers a quarterly educational newsletter and a book for
African American women living with breast cancer.
------------------------------------------------------------------------------------
LCA offers programs designed to help improve
the quality of life of people with lung
cancer and their families. Programs include education about
the disease, psychosocial support, and advocacy about issues that
concern lung cancer survivors.
------------------------------------------------------------------------------------
|
Organization:
|
The Lustgarten
Foundation for Pancreatic Cancer Research |
|
Address:
|
1111 Stewart Avenue
Bethpage, NY 11714 |
|
Telephone:
|
516–803–1000
1–866–789–1000 |
|
E-mail:
|
Available through the Web site |
|
Internet Web site:
|
http://www.lustgartenfoundation.org |
The Lustgarten Foundation funds research,
advocates for research funding, and raises awareness of pancreatic
cancer diagnosis, treatment, and prevention. The Foundation
assists patients and their families in obtaining the most accurate,
up-to-date information about pancreatic cancer. It provides educational
materials and publications about pancreatic cancer, including a
Spanish-language publication. It also has an on-staff social worker
available to make referrals to cancer support services.
------------------------------------------------------------------------------------
|
Organization:
|
Lymphoma Foundation
of America |
|
Address:
|
1100 North Main Street
Ann Arbor, MI 48104
|
|
Telephone:
|
734–222–1100
(main office)
1–800–385–1060 (patient hotline) |
|
E-mail:
|
LFA@lymphomahelp.org |
|
Internet Web site:
|
http://www.lymphomahelp.org |
The Lymphoma Foundation of America offers
one-on-one counseling, peer counseling, support, referrals for legal
advice and second opinions, and treatment information for lymphoma
patients, survivors, and their families. They also monitor and disseminate
information about research into possible causes of lymphoma.
------------------------------------------------------------------------------------
The LRF’s mission is to eradicate
lymphoma and serve those touched by this disease. The LRF funds
research, advocates for lymphoma-related legislation, and provides
educational and support programs for patients and their families.
------------------------------------------------------------------------------------
The MMRF supports research grants and
professional and patient symposia on multiple myeloma and related blood
cancers. The MMRF publishes a quarterly newsletter, and provides
referrals and information packets free of charge to patients and family
members.
------------------------------------------------------------------------------------
|
Organization:
|
National Asian
Women’s Health Organization (NAWHO) |
|
Address:
|
Suite 900
250 Montgomery Street
San Francisco, CA 94104 |
|
Telephone:
|
415–989–9747 |
|
E-mail:
|
nawho@nawho.org |
|
Internet Web site:
|
http://www.nawho.org
|
The NAWHO is working to improve the health
status of Asian women and families through research, education,
leadership, and public policy programs. The organization 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.
------------------------------------------------------------------------------------
|
Organization:
|
National Bone Marrow
Transplant Link (nbmtLink) |
|
Address:
|
Suite 108
20411 West 12 Mile Road
Southfield, MI 48076 |
|
Telephone:
|
1–800–546–5268
(1–800–LINK–BMT) |
|
E-mail:
|
nbmtlink@aol.com |
|
Internet Web site:
|
http://www.nbmtlink.org/ |
The nbmtLink motto is “A second
chance at life is our first 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.
------------------------------------------------------------------------------------
|
Organization:
|
National Brain Tumor
Foundation (NBTF) |
|
Address:
|
Suite 612
22 Battery Street
San Francisco, CA 94111–5520 |
|
Telephone:
|
415–834–9970
1–800–934–2873
(1–800–934–CURE) |
|
E-mail:
|
nbtf@braintumor.org |
|
Internet Web site:
|
http://www.braintumor.org |
The NBTF provides patients and their
families with information on how to cope with their 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. The NBTF also awards grants to fund research. Staff
are available to answer calls in Spanish, and some Spanish-language
publications are available.
------------------------------------------------------------------------------------
The NBCC is a breast cancer advocacy group
that educates and trains individuals to become advocates who
effectively influence public policies that affect breast cancer
research and treatment. It also promotes breast cancer research, and
works to improve access to high-quality breast cancer screening,
diagnosis, and treatment for all women.
------------------------------------------------------------------------------------
|
Organization:
|
National Coalition
for Cancer Survivorship (NCCS) |
|
Address:
|
Suite 770
1010 Wayne Avenue
Silver Spring, MD 20910–5600 |
|
Telephone:
|
301–650–9127
1–877–622–7937
(1–877–NCCS–YES) |
|
E-mail:
|
info@canceradvocacy.org |
|
Internet Web site:
|
http://www.canceradvocacy.org |
The 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.
------------------------------------------------------------------------------------
|
Organization:
|
National Hospice and
Palliative Care Organization (NHPCO) |
|
Address:
|
Suite 625
1700 Diagonal Road
Alexandria, VA 22314 |
|
Telephone:
|
703–837–1500
1–800–658–8898 (helpline) |
|
E-mail:
|
info@nhpco.org |
|
Internet Web site:
|
http://www.nhpco.org |
The NHPCO is an association of programs that
provide hospice and palliative care. It is designed to increase
awareness about hospice services and to champion the rights and issues
of terminally ill patients and their family members. The NHPCO 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.
------------------------------------------------------------------------------------
|
Organization:
|
National Lymphedema
Network (NLN) |
|
Address:
|
Suite 1111
1611 Telegraph Avenue
Oakland, CA 94612–2138 |
|
Telephone:
|
510–208–3200
1–800–541–3259 |
|
E-mail:
|
nln@lymphnet.org |
|
Internet Web site:
|
http://www.lymphnet.org |
The 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. They provide 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.
------------------------------------------------------------------------------------
|
Organization:
|
National Marrow Donor
Program® (NMDP) |
|
Address:
|
Suite 500
3001 Broadway Street, NE.
Minneapolis, MN 55413–1753 |
|
Telephone:
|
612–627–5800
1–800–627–7692
(1–800–MARROW–2)
1–888–999–6743 (Office of Patient
Advocacy) |
|
Internet Web site:
|
http://www.marrow.org |
The 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. The NMDP’s Office of Patient Advocacy
assists transplant
patients and their physicians through the donor search and transplant
process by providing information, referrals, support, and advocacy.
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|
Organization:
|
National Ovarian
Cancer Coalition (NOCC) |
|
Address:
|
Suite 8
500 Northeast Spanish River Boulevard
Boca Raton, FL 33431 |
|
Telephone:
|
561–393–0005
1–888–682–7426
(1–888–OVARIAN) |
|
E-mail:
|
NOCC@ovarian.org |
|
Internet Web site:
|
http://www.ovarian.org |
The NOCC raises awareness about ovarian
cancer and promotes education about this disease. They have a
toll-free telephone number for information about ovarian cancer. They
also offer support groups, a database of gynecologic
oncologists searchable by state, and educational materials. A limited
selection of Spanish-language publications is available.
------------------------------------------------------------------------------------
The NPTC provides the National Patient
Travel Helpline, a telephone service that facilitates patient access to
charitable medical air transportation resources in the United States.
The NPTC also offers information about discounted airline ticket
programs for patients and patient escorts, operates Special-Lift and
Child-Lift programs, and brings ambulatory outpatients to the United
States from many overseas locations.
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The Oral
Cancer Foundation is a nonprofit organization that is
dedicated to saving lives through education, research, prevention,
advocacy, and support for persons with oral cancer. The Foundation
provides an online Oral Cancer Forum, which includes a message board
and chat room that connect newly diagnosed patients, family members,
and the public.
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The Alliance works to increase public and
professional understanding of ovarian cancer and to advocate for
research to determine 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.
------------------------------------------------------------------------------------
|
Organization:
|
Pancreatic Cancer
Action Network (PanCAN) |
|
Address:
|
Suite 131
2221 Rosecrans Avenue
El Segundo, CA 90245 |
|
Telephone:
|
310–725–0025
1–877–272–6226
(1–877–2–PANCAN) |
|
E-mail:
|
information@pancan.org |
|
Internet Web site:
|
http://www.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.
------------------------------------------------------------------------------------
The PAF provides education, legal
counseling, and referrals to cancer patients and survivors concerning
managed care, insurance, financial issues, job discrimination, and debt
crisis matters. The Patient Assistance Program is a subsidiary of the
PAF. It provides financial assistance to patients who meet certain
qualifications. The toll-free number is
1–866–512–3861.
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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.
------------------------------------------------------------------------------------
|
Organization:
|
R. A. Bloch Cancer
Foundation, Inc. |
|
Address:
|
4400 Main Street
Kansas City, MO 64111 |
|
Telephone:
|
816–932–8453
(816–WE–BUILD)
1–800–433–0464 |
|
E-mail:
|
hotline@hrblock.com |
|
Internet Web site:
|
http://www.blochcancer.org |
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. The Foundation also
distributes informational materials, including a multidisciplinary
list of institutions that offer second opinions. Information is
available in Spanish.
------------------------------------------------------------------------------------
Sisters Network seeks to increase local and
national attention to the impact that breast cancer has in the African
American community. All chapters are run by breast cancer survivors and
receive volunteer assistance from community leaders and associate
members. The services provided by Sisters Network include
individual/group support, community education, advocacy, and research.
The national headquarters serves as a resource and referral base for
survivors, clinical trials, and private/government agencies.
Teleconferences are held to update chapters with the latest information
and share new ideas. An educational brochure designed for underserved
women is available. In addition, a national African American breast
cancer survivors’ newsletter is distributed to survivors,
medical facilities, government agencies, organizations, and churches
nationwide.
------------------------------------------------------------------------------------
|
Organization:
|
The Skin Cancer
Foundation |
|
Address:
|
Suite 1403
245 Fifth Avenue
New York, NY 10016 |
|
Telephone:
|
212–725–5176
1–800–754–6490
(1–800–SKIN–490) |
|
E-mail:
|
info@skincancer.org |
|
Internet Web site:
|
http://www.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 skin cancer.
------------------------------------------------------------------------------------
|
Organization:
|
Starlight Starbright
Children’s Foundation |
|
Westside location:
|
| Address: |
Suite 450
1850 Sawtelle Road
Los Angeles, CA 90025 |
|
Telephone:
|
310–479–1212
1–800–315–2580 |
|
E-mail:
|
joan.hilton@slsb.org |
|
Internet Web site:
|
http://www.slsb.org |
|
Mid-Wilshire location:
|
| Address: |
Suite 2250
5900 Wilshire Boulevard
Los Angeles, CA 90036 |
|
Telephone:
|
323–634–0080
1–800–274–7827 |
|
E-mail:
|
joan.hilton@slsb.org |
|
Internet Web site:
|
http://www.slsb.org |
In July 2004, the Starlight
Children’s Foundation and the STARBRIGHT Foundation merged to
form the Starlight Starbright Children’s Foundation.
Starlight Starbright is an international nonprofit organization
designed to help seriously ill children and adolescents cope with the
psychosocial and medical challenges they face. Starlight Starbright
offers in-hospital, outpatient,
school, and home-based programs and services free of charge to
children, adolescents, and their families during the course of an
illness and during recovery. Staff can respond to calls in Spanish, and
some of the programs are offered in Spanish.
------------------------------------------------------------------------------------
|
Organization:
|
Support for People
with Oral and Head and Neck Cancer (SPOHNC) |
|
Address:
|
Post Office Box 53
Locust Valley, NY 11560–0053 |
|
Telephone:
|
1–800–377–0928 |
|
E-mail:
|
info@spohnc.org |
|
Internet Web site:
|
http://www.spohnc.org |
The SPOHNC is a self-help organization that
serves oral and head
and neck cancer patients, survivors, and their families. The
organization offers support group meetings, information, newsletters,
and teleconferences. The SPOHNC also offers a “Survivor to
Survivor” network which pairs survivors or their family
members with volunteers who have had a similar diagnosis and treatment
program.
------------------------------------------------------------------------------------
|
Organization:
|
The Susan G. Komen
Breast Cancer Foundation |
|
Address:
|
Suite 250
5005 LBJ Freeway
Dallas, TX 75244 |
|
Telephone:
|
972–855–1600
1–800–462–9273
(1–800–I’M AWARE®) |
|
E-mail:
|
helpline@komen.org |
|
Internet Web site:
|
http://www.komen.org |
The Susan G. Komen Breast Cancer
Foundation’s mission is to eradicate breast cancer as a
life-threatening disease by advancing research, education, screening,
and treatment. This organization operates a national toll-free breast
cancer helpline (1–800–I’M AWARE) that is
answered by trained volunteers whose lives have been personally touched
by breast cancer. Breast health and breast cancer materials, including
pamphlets, brochures, booklets, posters, videos, CD-ROMs, fact sheets,
and community outreach materials, are available. Staff can respond to
calls in Spanish, and some publications are available in Spanish.
------------------------------------------------------------------------------------
|
Organization:
|
Thyroid Cancer
Survivors’ Association, Inc. (ThyCa) |
|
Address:
|
Post Office Box 1545
New York, NY 10159–1545 |
|
Telephone:
|
1–877–588–7904 |
|
E-mail:
|
thyca@thyca.org |
|
Internet Web site:
|
http://www.thyca.org |
ThyCa offers a network of services to thyroid
cancer survivors, caregivers, family members, and friends.
These services include e-mail support groups, person-to-person support,
local support groups, and a toll-free survivors’ telephone
line. ThyCa also offers a low-iodine
cookbook, newsletters, conferences, and workshops. The organization has
volunteers who are fluent in Spanish.
------------------------------------------------------------------------------------
|
Organization:
|
US®
TOO! International, Inc. |
|
Address:
|
5003 Fairview Avenue
Downers Grove, IL 60515 |
|
Telephone:
|
630–795–1002 (in
the Chicago area)
1–800–808–7866
(1–800–80–US TOO) |
|
E-mail:
|
ustoo@ustoo.com |
|
Internet Web site:
|
http://www.ustoo.org |
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.
------------------------------------------------------------------------------------
|
Organization:
|
Vital Options®
International TeleSupport® Cancer Network |
|
Address:
|
Suite 645
15821 Ventura Boulevard
Encino, CA 91436–2946 |
|
Telephone:
|
818–788–5225
1–800–477–7666
(1–800–GRP–ROOM) |
|
E-mail:
|
info@vitaloptions.org |
|
Internet Web site:
|
http://www.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
p.m. to 6 p.m., Eastern time, by calling the toll-free telephone
number. A live Web simulcast of “The Group Room”
can be heard by logging onto the Vital Options Web site.
------------------------------------------------------------------------------------
The Wellness Community provides free
psychological and emotional support to cancer patients and their
families. The organization offers support groups facilitated by
licensed therapists, stress reduction and cancer education workshops,
nutrition guidance, exercise sessions, and social events.
------------------------------------------------------------------------------------
|
Organization:
|
Y-ME National Breast
Cancer Organization™, Inc. |
|
Address:
|
Suite 500
212 West Van Buren Street
Chicago, IL 60607 |
|
Telephone:
|
312–986–8338
1–800–221–2141 (English)
1–800–986–9505 (Spanish) |
|
E-mail:
|
askyme@y-me.org
(English); latino@y-me.org
(Spanish) |
|
Internet Web site:
|
http://www.y-me.org |
The Y-ME National Breast Cancer
Organization provides information and support to anyone who has been
touched by breast cancer. Y-ME serves women with breast cancer and
their families through a national hotline (available 24 hours a day),
open-door groups, early detection workshops, and support programs.
Numerous local chapter offices are located throughout the United
States. A section of the Y-ME Web site, a toll-free hotline, and
publications are available in Spanish.
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|
