Bladder | Blood | Brain | Breast Cancer | Carcinoid | Childhood
| Colorectal | General | Leukemia
| Leukemia & Lymphoma | Lung |
Lymphoma | Ovarian | Pancreatic |
Prostate | Sarcoma | Skin | Thyroid
| Urological
Bladder
|
Facility: |
Bladder Cancer Advocacy Network |
|
Location: |
PO Box 341105, Bethesda, MD 20827 |
|
Phone: |
(301) 469-6865 |
|
Website: |
www.bcan.org |
|
Patient Tools/Materials: |
Website with resources directed to bladder cancer survivors and families; weekly
online chat room; quarterly electronic newsletter. |
|
Special Services : |
Regional patient forums on living with bladder cancer. Check websit for updated
information. |
|
|
Facility: |
Bladder Cancer WebCafe |
|
Location: |
1505 Spruce Avenue, Ocean, NJ 07712 |
|
Phone: |
(732) 774 5574 |
|
Website: |
http://blcwebcafe.org |
|
Patient Tools/Materials: |
Bladder Cancer WebCafe is a place for comprehensive information
about bladder cancer, its treatment options and the issues related to survivorship.
Patient-created survival guides and dozens of survivor stories help newcomers learn
the territory. |
|
Special Services : |
We have an online forum as well as a private email discussion
list, where hundreds of survivors share hard-earned wisdom. There is nothing like
first hand experience and that’s what makes Bladder Cancer WebCafe a unique resource
for those living with bladder cancer.. |
|
Blood
|
Facility: |
International Waldenstrom's Macroglobulinemia |
|
Location: |
3932 Swift Road, Suite D Sarasota, FL 34231 |
|
Phone: |
(941) 927-4963 |
|
Website: |
www.iwmf.com |
|
Patient Tools/Materials: |
www.iwmf.com;
Telephone Lifeline Support; Support Group Chapters; Telephone & Email Network; List
of IWMF members; Questions & Answers; Treatment Options & Review of Therapy; Living
with Waldenstrom's Macroglobulinemia pamphlet; Healthy Living Resource Guidebook;
Basic Immunology in WM; Medical Tests Including Glossary Of Medical Terms Relating
to Tests; Reports from the Second and Third International Workshops on WM |
|
Special Services : |
Annual Educational Forum held each spring; DVD presentations of
Educational Forums; The IWMF Torch - Quarterly Newsletter; Patient and physician
information packages available in several languages; Worldwide member support groups;
Member funded research support to top scientists in field. |
|
Brain
|
Facility: |
Brain Tumor Society |
|
Location: |
124 Watertown Street, Suite 3H, Watertown, MA 02472 |
|
Phone: |
(800) 770.8287 |
|
Website: |
www.tbts.org |
|
Patient Tools/Materials: |
BTS provides free informational materials and support services
to brain tumor patients, survivors and families. These include the Color Me Hope
Resource Guide, a quarterly newsletter and numerous fact sheets. Our Support Team
responds to individual inquiries for info, support, and referrals. |
|
Special Services : |
Our support team organizes a traveling one-day Seminar Series
for patients, survivors and caregivers. Visit our website for upcoming Seminars
and other events. |
|
Breast Cancer
|
Facility: |
The Breast Cancer Research Foundation |
|
Location: |
60 East 56th Street, 8th Floor, New York, NY 10022 |
|
Phone: |
(800) FIND-A-CURE |
|
Website: |
www.bcrfcure.org |
|
Patient Tools/Materials: |
The Breast Cancer Research Foundation® is dedicated to preventing
breast cancer and finding a cure in our lifetime by funding clinical and genetic
research worldwide. A minimum of 85 cents of each dollar donated to the Foundation
goes directly to breast cancer research and awareness programs. |
|
Special Services : |
The Foundation is strictly a fundraising organization. We are
not a medical office and cannot give medical advice, answer questions requiring
medical diagnosis, or engage in rendering medical or other professional services. |
|
|
Facility: |
MSDBC (Mothers Supporting Daughters with Breast Cancer) |
|
Location: |
25235 Foxchase Drive, Chestertown, MD 21620 |
|
Phone: |
(410) 778-1982 |
|
Website: |
www.mothersdaughters.org |
|
Patient Tools/Materials: |
Providing optimum emotional support to mothers of daughters with
breast cancer, so the mothers may support their daughters and they can jointly cope
with effects breast cancer has on them as women, as mothers, and as daughters. Our
support to mothers is tailored to their individual needs. |
|
Special Services : |
Literature – Mother’s Handbook, Daughter’s Booklet, brochure telling
the things we mail to anyone, anywhere in the world. One-on-one support with mothers
who have experienced this crisis with their daughters. |
|
|
Facility: |
Pink-Link |
|
Location: |
149 South Barrington Avenue, #734, Los Angeles, CA 90049 |
|
Phone: |
(301) 469-6865 |
|
Website: |
www.pink-link.org |
|
Patient Tools/Materials: |
Pink-Link is a nonprofit organization which provides an online
support resource for women affected by breast cancer. On our website, www.pink-link.org,
women can connect with other women with similar breast cancer issues using the search
capabilities of our innovative online database. |
|
Special Services : |
Our members can create a personal journal to keep family and friends
updated about their treatment and get help from our on-staff professionals regarding
nutrition, exercise and alternative medicine. All services provided on our website
are completely free. |
|
|
Facility: |
Sharsheret |
|
Location: |
1086 Teaneck Road, Suite 3A, Teaneck, NJ 07666 |
|
Phone: |
(866) 474-2774 |
|
Website: |
www.sharsheret.org |
|
Patient Tools/Materials: |
Culturally-sensitive resource series including 4 booklets: “Facing
Breast Cancer as a Jewish Woman”, “Facing Breast Cancer as an Orthodox Jewish Woman”,
“Breast Cancer Genetics and the Jewish Woman”, “The Jewish Family Facing Breast
Cancer”. |
|
Special Services : |
Link Program, a peer support network; Education and Outreach Programs;
and Quality of Life Programs, including the Busy Box for young parents, Best Face
Forward to address the cosmetic side effects of treatment, and Embrace, for women
living with advanced breast cancer.
|
|
|
Facility: |
Susan G. Komen for the Cure |
|
Location: |
5005 LBJ Freeway, Suite 250, Dallas, TX 75244 |
|
Phone: |
(800) I’M AWARE |
|
Website: |
www.komen.org |
|
Patient Tools/Materials: |
Breast self-exam cards and interactive tutorial; Facts for Life
– breast cancer information sheets; Questions to Ask the Doctor – a series of 14
topic cards; “What’s Happening . . .?” bilingual booklets for breast cancer survivors
and those who care for them; Message boards; Bilingual helpline. |
|
Special Services : |
The Komen Breast Care Helpline is answered by trained, caring
volunteers and staff who provide timely and accurate information to anyone with
breast health and breast cancer concerns, including patients, their families and
friends. Call M–F, 9am to 5pm CST. |
|
|
Facility: |
MSDBC (Mothers Supporting Daughters with Breast Cancer) |
|
Location: |
25235 Foxchase Drive, Chestertown, MD 21620 |
|
Phone: |
(410) 778-1982 |
|
Website: |
www.mothersdaughters.org |
|
Patient Tools/Materials: |
Providing optimum emotional support to mothers of daughters with
breast cancer, so the mothers may support their daughters and they can jointly cope
with effects breast cancer has on them as women, as mothers, and as daughters. Our
support to mothers is tailored to their individual needs. |
|
Special Services : |
Mother’s Handbook, Daughter’s Booklet, brochure telling the things
we mail to anyone, anywhere in the world. One-on-one support with mothers who have
experienced this crisis with their daughters. |
|
|
Facility: |
Y-ME National Breast Cancer Organization |
|
Location: |
212 West Van Buren Street, Suite 1000, Chicago, IL 60607 |
|
Phone: |
(800) 221-2141 |
|
Website: |
www.y-me.org |
|
Patient Tools/Materials: |
Early detection brochures and Web site content in English, Spanish,
Chinese, Korean, Vietnamese, Tagalog, Hindi and Russian Lifeline, Latina News, and
Peer to Peer, quarterly print and monthly e-mail newsletters. Informational brochures
about breast cancer, advanced disease and clinical trials. |
|
Special Services : |
Y-ME’s 24/7 hotline is staffed entirely by trained breast cancer
survivors and provides information and support for anyone touched by breast cancer.
(800) 221-2141 (English, with interpreters available in 150 languages) or (800)
986-9505 (Spanish). |
|
|
Facility: |
Young Survival Coalition |
|
Location: |
61 Broadway, Suite 2235, New York, NY 10006 |
|
Phone: |
(877) YSC-1011
|
|
Website: |
www.youngsurvival.org |
|
Patient Tools/Materials: |
Resources for young women with metastatic disease, ResourceLink
Guidebook and other education materials for young women affected by breast cancer,
Point of Contact program, affiliates around the country, ResourceLink information
line at (877) YSC-1011 or ResourceLink@youngsurvival.org. |
|
Special Services : |
The YSC is the only international, non-profit network of breast
cancer survivors and supporters dedicated to the concerns and issues that are unique
to young women and breast cancer. |
|
Carcinoid
|
Facility: |
The Carcinoid Cancer Foundation, Inc. |
|
Location: |
333 Mamaroneck Avenue, #492, White Plains, NY 10605 |
|
Phone: |
(888) 722-3132 (toll free) or (914) 683-1001 |
|
Website: |
www.carcinoid.org |
|
Patient Tools/Materials: |
Listings of national and international carcinoid/neuroendocrine
tumor specialists; listings of support groups throughout the U.S., Canada and Europe;
medical articles for the layperson and physicians about diagnosis and treatment;
information about national and local conferences; and a periodic newsletter. |
|
Special Services : |
Annual conference in New York City; Webcasts/ lecture transcripts
of physician presentations; support of research projects to improve diagnosis and
treatment with the goal of finding a cure. |
|
Childhood
|
Facility: |
Coaches Curing Kids’ Cancer |
|
Location: |
4250 Vienna Way, Marietta, GA 30062 |
|
Phone: |
(866) 933-CURE |
|
Website: |
www.curingkidscancer.org |
|
Patient Tools/Materials: |
Childhood Cancer Fact Sheets and fundraising information is available
at www.curingkidscancer.org/ spread_word.htm. |
|
Special Services : |
Curing Kids’ Cancer Inc. aims to raise both awareness and money
to find cures for all types of childhood cancer. Our programs fund the development
of cutting edge therapies, which will revolutionize childhood cancer treatment by
replacing traditional chemotherapy. |
|
|
Facility: |
CureSearch National Childhood Cancer Foundation |
|
Location: |
4600 East West Highway, Suite 600, Bethesda, MD 20814 |
|
Phone: |
(301) 718-0042 |
|
Website: |
www.curesearch.org |
|
Patient Tools/Materials: |
CureSearch.org is for children with cancer and their families.
Provides research data, customized information and support tailored to a child’s
age, diagnosis and treatment options, from the Children’s Oncology Group, the world’s
largest and trusted pediatric cancer research organization. |
|
Special Services : |
Research is the key to curing childhood cancer. CureSearch.org
provides information on raising awareness and funds for childhood cancer research
through advocacy, special events, young artist gift shop and tax-deductible donations. |
|
|
Facility: |
Kids Konnected |
|
Location: |
27071 Cabot Road, #102, Laguna Hills, CA 92653 |
|
Phone: |
(800) 899-2866 |
|
Website: |
www.kidskonnected.org |
|
Patient Tools/Materials: |
Support groups, summer camps and counseling materials for kids
(ages 4-18) who have a parent with cancer or who have lost a parent to cancer. |
|
Special Services : |
Teddy Bear Care Package mailed to kids anywhere in the USA. Includes
cancer support materials, parent guide and cute teddy bear. |
|
Colorectal
|
Facility: |
C3: Colorectal Cancer Coalition |
|
Location: |
4301 Connecticut Avenue NW, Suite 404, Washington, DC 20008 |
|
Phone: |
(202) 244-2906 |
|
Website: |
www.fightcolorectalcancer.org |
|
Patient Tools/Materials: |
Patient-friendly, up-to-date screening, diagnosis and treatment
information reviewed by health professionals. Personalized clinical trials matching
either online or by phone – (866) 278-0392. Recent research results important to
people living with colorectal cancer. |
|
Special Services : |
C3 offers specialized training programs for research and grassroots
patient advocates committed to changing the future of colorectal cancer today through
targeted and effective advocacy. |
|
|
Facility: |
Colon Cancer Alliance |
|
Location: |
1440 Coral Ridge Drive, Suite 386, Coral Springs, FL 33071 |
|
Phone: |
(877) 422-2030 |
|
Website: |
www.ccalliance.org |
|
Patient Tools/Materials: |
We offer patient education and support to anyone affected by colorectal
cancer. |
|
Special Services : |
We have a buddy program to match newlydiagnosed patients as well
as caregivers with someone who is a bit further down in the road in their cancer
journey. |
|
General
|
Facility: |
American Self-Help Group Clearinghouse |
|
Location: |
100 East Hanover Avenue, Suite 2025, Cedar Knolls, NJ 07927 |
|
Phone: |
(973) 326-6789 |
|
Website: |
http://mentalhelp.net/selfhelp |
|
Patient Tools/Materials: |
A keyword-searchable database of national self-help groups for
various illnesses, caregiver concerns, bereavement situations; - listing of local
non-profit self-help clearinghouses worldwide, and - suggestions for starting community
and/or online mutual help groups.
|
|
Special Services : |
Those without Internet access can phone their national group information
helpline at 973-326-6789 (8:30am - 5pm Eastern, weekdays) for information on national,
online, and model groups. |
|
|
Facility: |
Angel Flight Central |
|
Location: |
10 Richards Road, Kansas City, MO 64116 |
|
Phone: |
(877) 621-7177 |
|
Website: |
www.angelflightcentral.org |
|
Patient Tools/Materials: |
Angel Flight Central serves people in need by arranging charitable
flights for access to health care and for other humanitarian purposes. Angel Flight
Central services are free. |
|
Special Services : |
Passengers must be medically stable, be able to walk and sit up
right for long periods of time. Angel Flight will also fly family members for reasons
of compassion. |
|
|
Facility: |
Association of Community Cancer Centers |
|
Phone: |
301.984.9496 |
|
Website: |
www.accc-cancer.org |
|
|
Facility: |
Bloch Cancer Hotline |
|
Location: |
One H&R Block Way, Kansas City, MO 64105 |
|
Phone: |
(800) 433-0464 |
|
Website: |
www.blochcancer.org |
|
Patient Tools/Materials: |
Free books on survivorship and support: “Fighting Cancer,” “Cancer...there’s
hope” and “Guide for Cancer Supporters.” Online list of long-term cancer survivors.
List of 22 Richard & Annette Bloch Cancer Survivor Parks in the U.S. and Canada.
Free bookmarks and cards that describe our services and how to reach us. Link to
National Cancer Institute’s PDQ databank and clinical trial info. |
|
Special Services : |
Peer-to-peer counseling by phone or e-mail for patients and supporters
from volunteers who have survived the same type of cancer. |
|
|
Facility: |
CS Communications |
|
Phone: |
604.685.1266 |
|
Website: |
www.knowitallhealth.com |
|
Special Services : |
Knowitallhealth is a new online tool that, unlike regular health
sites, acts as a filter for Internet health information. The site brings together
some of the most accessible and credentialed sources of Web-based medical and health
information in one easy-to-use site. |
|
|
Facility: |
Cancer and Careers |
|
Location: |
21 East 40th, New York, NY 10016 |
|
Website: |
www.cancerandcareers.org |
|
Patient Tools/Materials: |
An information guide for women with cancer and their employers.
The program offers free printed publications and online tools, articles and resources
for anyone dealing with cancer in the workplace. Visit www.cancerandcareers.org
for more information. |
|
|
Facility: |
Cancer Information and Counseling |
|
Location: |
1600 South Pierce Street, Denver, CO 80214 |
|
Phone: |
(800) 525-3777 |
|
Patient Tools/Materials: |
Toll-Free counseling line available Monday through Friday 8:30am
to 5:00 pm MST |
|
Special Services : |
A national toll-free telephone information line designed to help
people and their families who are dealing with cancer. The CICL provides up-to-date
medical information and emotional support through short-term counseling and resource
referrals. |
|
|
Facility: |
Cancer Legal Resource Center |
|
Location: |
919 Albany Street, Los Angeles, CA 90254 |
|
Phone: |
(866) 843-2572 |
|
Website: |
www.disabilityrightslegalcenter.org |
|
Patient Tools/Materials: |
Materials available in English and Spanish. |
|
Special Services : |
The CLRC provides free and confidential information and resources
on cancer-related legal issues to people coping with cancer. We attend community
events and do in-service trainings on cancer-related legal issues. |
|
|
Facility: |
Cancer411.org |
|
Location: |
1316 West Alameda Avenue, Burbank, CA 91506 |
|
Phone: |
(818) 842-1504 |
|
Website: |
www.cancer411.org |
|
Patient Tools/Materials: |
A comprehensive online resource and database of cancer: treatment
options, videos, journal entries, news articles, real time clinical trials, hospitals,
medical centers, support groups, and more. |
|
Special Services : |
Other features include: information on free air travel for cancer
patients, chat rooms, message boards, patients and caregiver tools, complementary
treatments, non-medical patient services, foundations, books, periodicals, nutrition
and more. |
|
|
Facility: |
CancerQuest |
|
Location: |
2017 Rollins Research Center, Atlanta, GA 30322 |
|
Phone: |
(404) 727-0308 |
|
Website: |
www.cancerquest.org |
|
Patient Tools/Materials: |
This is a free, educational website that provides text, animations
and videos educate patients and caregivers about cancer biology, detection and treatment. |
|
|
Facility: |
CaringBridge |
|
Location: |
1995 Rahn Cliff Court, Suite 200, Eagan, MN 55122 |
|
Phone: |
(651) 452-7940
|
|
Website: |
www.caringbridge.org |
|
Patient Tools/Materials: |
Free personalized websites that allow people to stay in touch
with family and friends during cancer treatment, hospitalization and recovery. It’s
easy to share information and receive love, support and encouragement. Get started
at www.CaringBridge. org, and click on “Create a CaringBrige site.” |
|
Special Services : |
CaringBridge is a nonprofit organization focused on the needs
of patients and their families. To date, over 250 million people have been part
of a CaringBridge experience, and more than 1 million people visit a CaringBridge
website each month. |
|
|
Facility: |
Caring Connections, a Program of the National Hospice
and Palliative Care Organization (NHPCO) |
|
Location: |
1700 Diagonal Road, Suite 625, Alexandria, VA 22314 |
|
Phone: |
(800) 658-8898 (English); (877) 658-8896 (Spanish) |
|
Website: |
www.caringinfo.org |
|
Patient Tools/Materials: |
Caring Connections provides free brochures on a wide range of
end-of-life topics including advance care planning, caregiving, hospice and palliative
care and grief and loss. State-specific advance directives for all 50 states are
available for free download or by calling us.
|
|
Special Services : |
Caring Connections can also provide free referrals to hospice/palliative
care programs throughout the country. |
|
|
Facility: |
Circus of Cancer |
|
Website: |
www.circusofcancer.org |
|
Patient Tools/Materials: |
A How-to guide for friends and family of cancer patients. Circus
of Cancer has over 100 specific suggestions of how to help a friend through diagnosis,
chemo, surgery and radiation. |
|
Special Services : |
Circus of Cancer is an encouraging, inspiring, informative website
for all people who care about someone fighting cancer. |
|
|
Facility: |
FORCE: Facing Our Risk of Cancer Empowered |
|
Location: |
16057 Tampa Palms Boulevard West, #373, Tampa, FL 33647 |
|
Phone: |
(954) 255-8732 |
|
Website: |
www.facingourrisk.org |
|
Patient Tools/Materials: |
Website with comprehensive information on hereditary breast and
ovarian cancer and the risk for these cancers. |
|
Special Services : |
Toll free help-line (866) 824-RISK. Face-to-face support groups.
Free quarterly newsletter. National Conference. |
|
|
Facility: |
Gilda’s Club Worldwide |
|
Location: |
322 8th Avenue, Suite 1402, New York, NY 10001 |
|
Phone: |
(917) 305-1200 |
|
Website: |
www.gildasclub.org |
|
Patient Tools/Materials: |
Patient Education Referrals |
|
Special Services : |
A network of support centers where men, women, and children with
cancer bring their families and friends to join with others to build social and
emotional support as a supplement to medical care in a free, nonresidential home-like
setting. Support groups, networking groups, lectures, workshops and social events
are all available for people with all kinds and stages of cancer. |
|
|
Facility: |
Gynecologic Cancer Foundation |
|
Location: |
230 West Monroe, Suite 2528, Chicago, IL 60606 |
|
Phone: |
(312) 578-1439 |
|
Website: |
www.thegcf.org;
www.thewcn.org (Women’s Cancer
Network) |
|
Patient Tools/Materials: |
Information on women’s cancers, how to locate the nearest gynecologic
oncologist and a risk-assessment tool. |
|
Special Services : |
Patient referral hotline: (800) 444-4441, Women’s Cancer Network
Web site: www.wcn.org. |
|
|
Facility: |
ICARE (International Cancer Alliance for Research and
Education) |
|
Location: |
4853 Cordell Avenue, Suite 14, Floor 16, Bethesda, MD 20814 |
|
Phone: |
(301) 656-3461 |
|
Website: |
www.icare.org |
|
Patient Tools/Materials: |
For most cancer patients, your doctor is often the sole provider
of treatment options to you. ICARE’s unique approach connects you, your doctor and
the world’s top research scientists to insure that all available therapies and diagnostic
tests are considered. |
|
Special Services : |
Programs; Patient Registry & Monitor, Cancer Therapy Reviews,
Cancer Breakthroughs, Pharmaceutical Updates, Local ICARE Centers, Patient Experiences,
Symposia, Webcasts; Personalized I-Teams, Video-Teleconferencing, Clinical Trial
Matching. |
|
|
Facility: |
JACOB International / REACH Global |
|
Location: |
PO Box 880688, Boca Raton, FL 33488 |
|
Phone: |
(561) 394-9100 |
|
Website: |
www.jacobintl.org;
www.reachglobal.org |
|
Patient Tools/Materials: |
JACOB International and REACH Global educate women about the benefits
of genetic testing to stop hereditary breast and ovarian cancer. |
|
Special Services : |
Links to numerous resources for information. |
|
|
Facility: |
Lance Armstrong Foundation |
|
Location: |
PO Box 161150, Austin, TX 78716-1150 |
|
Phone: |
(512) 236-8820 |
|
Website: |
www.livestrong.org |
|
Patient Tools/Materials: |
LIVESTRONG SurvivorCare and LIVESTRONG Resource Center |
|
|
Facility: |
Missys’ Mirror |
|
Location: |
4321 Washington, Suite 4000, Kansas City, MO 64111 |
|
Phone: |
(816.932.2565 |
|
Website: |
www.saintlukeshealthsystem.org/slhs/Locations/ Saint_Lukes_Cancer_Institute/Missys_Mirror.htm |
|
Patient Tools/Materials: |
Missy’s Mirror is a nonprofit cancer appearance center. The boutique
includes specialty items, private consultations with a board certified prosthesis
fitter; jewelry, scarves, hats, accessories and clothing items, children’s corner,
hair salon, full makeup and skin care line, and makeover area. |
|
Special Services : |
All proceeds help uninsured and underinsured patients pay for
wigs, scarves, hats, and prosthetics. |
|
|
Facility: |
National Coalition for Cancer Survivorship |
|
Location: |
1010 Wayne Avenue, Suite 770, Silver Spring, MD 20910 |
|
Phone: |
(301) 650-9127 |
|
Website: |
www.canceradvocacy.org |
|
Patient Tools/Materials: |
Our Cancer Survival Toolbox® is a free audio program designed
to help cancer survivors and caregivers develop practical skills to deal with the
diagnosis, treatment and challenges of cancer, available in English, Spanish, and
Chinese (transcript only). Visit www.cancersurvivaltoolbox.org to hear Real audio
files, download mp3 files, or read transcripts. The modules are also available free
on iTunes. Our publications, available in English and Spanish, focus on issues including
employment, insurance, remaining hopeful, working as a team with health-care providers,
and self-advocacy (English only). |
|
|
Facility: |
National Lymphedema Network, Inc. |
|
Location: |
1611 Telegraph Avenue, Suite 1111, Oakland, CA 94612 |
|
Phone: |
(510) 208-3200 (Direct Line) or (800) 541-3259 (Info Line) |
|
Website: |
www.lymphnet.org |
|
Patient Tools/Materials: |
The National Lymphedema Network is an internationally recognized
non-profit organization that 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. |
|
Special Services : |
Quarterly newsletter, LymphLink, wide selection of education materials
including a lymphedema alert bracelet, phone numbers for treatment centers, therapists
and support groups nationwide. |
|
|
Facility: |
National Collegiate Cancer Foundation |
|
Location: |
PO Box 14521, Silver Spring, MD 20911 |
|
Phone: |
(717) 215-0943 |
|
Website: |
www.collegiatecancer.org |
|
Patient Tools/Materials: |
The Foundation encourages students to continue with higher education
throughout their treatment and is committed to providing need-based financial support
to these students and their families. Furthermore, the National Collegiate Cancer
Foundation will promote awareness and prevention of cancer. |
|
|
Facility: |
National Organization for Rare Disorders (NORD) |
|
Location: |
PO Box 1968, 55 Kenosia Drive, Danbury, CT |
|
Phone: |
(203) 744-0100; (800) 999-NORD |
|
Website: |
www.rarediseases.org |
|
Patient Tools/Materials: |
NORD provides information about rare diseases and referrals to
support organizations. We also have a research grants and fellowships, and we administer
medication assistance programs to help needy patients obtain certain medications
that they could not otherwise afford. |
|
Special Services : |
Send questions to our registered nurse at
RN@rarediseases.org or to our genetic counselor at
Genetic_Counselor@rarediseases.org. |
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Facility: |
Native American Cancer Research (NACR) |
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Location: |
3022 South Nova Road, Pine, CO 80470 |
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Phone: |
(303) 838-9359 |
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Website: |
www.NatAmCancer.org |
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Patient Tools/Materials: |
Toll-free hotline: (800) 537-8295 Monday through Friday 9am –
2pm Mountain Time Zone. |
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Special Services : |
NACR provides Native-specific cancer education information, in
a culturally respectful manner, and resources to reduce cancer incidence and increase
survival among Native Americans. We have free downloads on our website; Trainings;
Community Education; Public Speaking; Survivors’ Conference; Publication and Grant
Technical Assistance. |
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Facility: |
NeedyMeds.com |
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Location: |
120 Western Avenue, Gloucester, MA 01930 |
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Phone: |
(215) 625-9609 |
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Website: |
www.needymeds.com |
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Patient Tools/Materials: |
NeedyMeds.com is a free, accurate and up-to-date point of access
to information about 375 pharmaceutical patient assistance programs (PAPs) offering
free or low cost prescriptions to people who cannot afford their medicine. |
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Special Services : |
The NeedyMeds.com website describes the application and eligibility
process for PAPs and other sources of healthcare services including Medicaid, information
about where to go for help with paperwork and the latest news about Medicare Part
D benefits. |
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Facility: |
Nueva Vida, Support Network for Latinas with Cancer |
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Location: |
2000 P Street NW, Suite 740, Washington, DC 20036 |
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Phone: |
(202) 223-9100 |
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Website: |
www.nueva-vida.org |
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Patient Tools/Materials: |
Nueva Vida’s mission is to inform, support and empower Latinas
whose lives are affected by cancer, and to advocate for and facilitate the timely
access to state of the art cancer care, including screening, diagnosis, treatment
and care for all Latinas. |
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Special Services : |
Our mental health program addresses cultural and social stressors
that exacerbate anxiety, depression, fatigue and pain during treatment through support
groups, individual counseling, and peer support. Our access program provides support
to women in their interactions with the healthcare system. |
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Facility: |
The Oley Foundation |
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Location: |
214 Hun Memorial, MC-28, Albany Medical Center, Albany, NY 12208 |
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Phone: |
(800) 766-OLEY |
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Website: |
www.oley.org |
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Patient Tools/Materials: |
Lifeline Letter: a bimonthly newsletter with articles about medical
advances and personal experiences, written for homePEN consumers and their families
Information Clearinghouse: a resource designed to answer questions about homePEN
through a toll-free hotline, website, and video tape library New Oley Website: www.oley.org
has been updated and improved, now featuring past Lifeline Newsletter issues, patient
profiles, contact information, and much more. Video/DVD Library: includes "Get to
Know Oley" videos, filming of past Oley conferences, product information DVDs, and
more HPN/HEN Complication Charts: a comprehensive, easy-to-read compilation of what
to look for as a consumer Keep Me Safe: a nation-wide campaign promoting proper
care of vascular access devices in a hospital setting. Your IV is your lifeline,
and you can use our bracelets and posters to remind clinicians
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Special Services : |
Annual Summer Conference: an opportunity for homePEN consumers,
clinicians, providers, and industry representatives to share information and support
Regional Conferences: a scaled down version of Oley's annual Summer conference,
brought to your hometown. Several times a year, one-day conferences are hosted throughout
the country Regional Coordinator Network: a grassroots network of 70+ volunteers-all
homePEN consumers or caregivers-who run support groups and provide outreach and
education at the local level in Canada and the U.S. Toll-free Consumer Network:
a networking tool that provides members free phone access to different experienced
homePEN consumers and caregivers each month. |
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Facility: |
Partners Against Pain |
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Location: |
One Stamford Forum, Stamford, CT 06901 |
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Phone: |
(301) 650-9127 |
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Website: |
www.partnersagainstpain.com |
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Patient Tools/Materials: |
The Partners Against Pain web site offers patients and their caregivers
a variety of helpful tools as well as links to resources including issues related
to pain management, quality of life, and advocacy.
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Special Services : |
The website helps the user to learn about types and causes of
pain, how to discuss pain with their healthcare team, treatment options, financial
assistance and advocacy skills. In addition, one can sign up to receive the monthly
In the Face of Pain e-newsletter, which is full of timely information. |
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Facility: |
Patient Advocate Foundation |
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Location: |
700 Thimble Shoals Boulevard, Suite 200, Newport News, VA 23606 |
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Phone: |
(800) 532-5274
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Website: |
www.patientadvocate.org |
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Patient Tools/Materials: |
Pharmaceutical co-pay assistance through our CPR program – www.copays.org
or call 866.512.3861. Hotline for colorectal cancer patients providing educational
assistance, access to care and financial aid – www.colorectalcareline.org or call
866.657.8634. |
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Special Services : |
Provide free, direct case management counseling services for patients
diagnosed with chronic, life-threatening diseases regardless of insurance status.
Advocate, mediate, appeal and expedite access to prescribed medical care for all
Americans. |
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