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Comprehensive listing

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    Posted: Mar 10 2009 at 11:33am
As usual, I am digging around and lurking here and there.
 
I came across this website, and a page that is very valuable. The list of links is extensive and long, but the great deal of helpful information, for just about anything and anywhere for anyone with cancer. 
 
It covers everything from trials, to genetics, grants, financial help, travel assistance,  you name it, you can probably find help here somewhere. If you can not find something on there, there is a link additional assistance.
 
 If this list helps even one person, its well worth it. This list involves global information and assistance as well, so it is not just for people in the US.
 

Cancer Resource Links


Cancer Library

MEDLINE Authoritative information from the National Library of Medicine, the National Institutes of Health (NIH), and other organizations. MEDLINE has more than 10 million journal article references and abstracts going back to the early 1960s.


Clinical Trials


Find a Clinical Trial Near You

Each of the following websites will provide you with a listing of cancer clinical trials.

ClinicalTrials.gov:  Website that provides patients, family members, and members of the public easy and free access to information on clinical studies for a wide range of diseases and conditions.

National Cancer Institute (NCI): Conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of patients with cancer and the families of patients with cancer. 800.4.CANCER

National Comprehensive Cancer Network (NCCN): Cancer clinical trials are research studies to find better ways to treat cancer. Clinical trials often compare the most accepted cancer treatment (standard treatment) with a new treatment that doctors hope will be better. What doctors learn in these trials will help people with cancer-now and in the future. NCCN is committed to improving and advancing promising cancer therapies through clinical trials. NCCN’s Oncology Research Program (ORP) supports research at NCCN Member Institutions and facilitates the post-approval evaluation of innovative and promising therapies. 215.690.0300

U.S. Food and Drug Administration (FDA) Cancer Liaison Program: Offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions and provides patients, family members and members of the public current information about clinical research studies, and basic information about clinical trials.

Listing of Cancer Cooperative Groups*

Each of the following websites provides information about cancer cooperative groups which include researchers, cancer centers, and community physicians. They work with NCI to identify important questions in cancer research and to design clinical trials to answer these questions.

AIDS Malignancy Consortium (AMC): The organization and structure of the AMC is designed to foster development of innovative research ideas designed to reduce the burden of malignancy among HIV-infected individuals. 301.251.1161

American College of Radiology Imaging Network (ACRIN): The organization's overarching goal is - through clinical trials of diagnostic imaging and image-guided therapeutic technologies to generate information that will lengthen and improve the quality of the lives of patients with cancer. 215.574.3182 or 800.227.5463

American College of Surgeons Oncology Group (ACOSOG): Established primarily to evaluate the surgical management of patients with malignant solid tumors. 919.668.8400

C3: Colorectal Cancer Coalition: A national organization whose mission is to eliminate suffering and death due to colon and rectal cancer through advocacy. C3 pushes for research to improve screening, diagnosis, and treatment of colorectal cancer; for policy decisions that make the most effective colon and rectal cancer prevention and treatment available to all; and for increased awareness that colorectal cancer is preventable, treatable, and beatable. 703.548.1225

Cancer and Leukemia Group B (CALGB): The Cancer and Leukemia Group B (CALGB) is a national clinical research group sponsored by the National Cancer Institute, with its Central Office headquartered at the University of Chicago and its Statistical Center located at Duke University. CALGB research is focused on seven major disease areas: leukemia, lymphoma, breast cancer, lung cancer, gastrointestinal malignancies, genito-urinary malignancies, and melanoma. In each of these areas, multi-modality treatment programs are designed by national experts in an attempt to cure more patients with cancer. 773.702.9171

Cancer Therapy Evaluation Program (CTEP): A research organization focused on improving the lives of patients with cancer by finding better ways to treat, control, and cure cancer. CTEP accomplishes this mission by funding an extensive national program of cancer research and by sponsoring clinical trials to evaluate new anti-cancer agents. CTEP works extensively with the pharmaceutical/biotechnology industry to effectively develop new cancer treatments.

Cancer Trials Support Group (CTSU): A pilot project sponsored by the National Cancer Institute (NCI) for the support of a national network of physicians to participate in NCI-sponsored Phase III cancer treatment trials. The majority of these trials are sponsored by the adult Cooperative Clinical Trials Groups listed here. 888.823.5923

Children’s Oncology Group (COG): A National Cancer Institute (NCI) sponsored cooperative group dedicated to controlling cancer among children and adolescents. 800.458.6223

Coalition of Cancer Cooperative Groups (CCOG): The nation’s premier network of cancer clinical trials specialists. Its membership includes all ten of the nation’s federally funded cancer Cooperative Groups, cancer centers, academic medical centers, community hospitals, physicians, and more than forty patient advocacy groups. 877.520.4457

Eastern Cooperative Oncology Group (ECOG): One of the largest clinical cancer research organizations in the United States conducting clinical trials in all types of adult cancers. The Eastern Cooperative Oncology group works primarily with member institutions to coordinate clinical trials.

European Organisation for Research and Treatment of Cancer (EORTC): Aims are to develop, conduct, coordinate, and stimulate laboratory and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patients’ quality of life. +32 2 774 16 11

Gynecologic Oncology Group (GOG): A non-profit organization with the purpose of promoting excellence in the quality and integrity of clinical and basic scientific research in the field of Gynecologic malignancies. The Group is committed to maintaining the highest standards in clinical trials development, execution, analysis and distribution of results. Continuous evaluation of processes is utilized in order to constantly improve the quality of patient care. 800.225.3053

North Central Cancer Treatment Group (NCCTG): Is dedicated to bringing clinical trials with promising new cancer therapies to communities where patients live. NCCTG specializes in researching methods of treating and preventing cancer, and in researching methods to alleviate the side effects of cancer and cancer treatments. 507.538.0906

National Cancer Institute of Canada Clinical Trials Group (NCIC CTG): Is a cooperative oncology group which carries out clinical trials in cancer therapy, supportive care and prevention across Canada and internationally. It is one of the national programmes and networks of the National Cancer Institute of Canada (NCIC), and is supported by the NCIC with funds raised by the Canadian Cancer Society (CCS). 613.533.6430

National Surgical Adjuvant Breast and Bowel Project (NSABP): Is a clinical trials cooperative group supported by the National Cancer Institute (NCI). This group has nearly 50-year history of designing and conducting clinical trials that have changed the way breast cancer is treated, and, more recently, prevented. 412.330.4600

Radiation Therapy Oncology Group (RTOG): Is a national cancer study research group funded by NCI headquartered in Philadelphia with almost 30 years of experience in running clinical trials. It is comprised of 250 major research institutions nationally and in Canada. 800.277.5463

Southwest Oncology Group (SWOG): Is one of the largest cancer clinical trials cooperative groups in the United States. Funded by research grants from the National Cancer Institute, part of the National Institutes of Health, the Group conducts clinical trials to prevent and treat cancer in adults, and to improve the quality of life for cancer survivors. Southwest Oncology Group studies many adult cancer types, including breast, gastrointestinal, genitourinary, gynecologic, head and neck, and lung cancers, as well as melanoma, myeloma, sarcoma, leukemia and lymphoma. 734.998.7130

*Please note: listings of clinical trials may be found under the headings “studies”, “protocols”, “clinical trials”, or “research”. A few of these websites only allow access to clinical trial listings for members or investigators, but patients can contact those organizations directly if they wish to seek more information.

Learn About Clinical Research

American Association for Cancer Research (AACR): This website explains how to find and evaluate a scientific paper or article. The authoritative source of information about advances in the causes, diagnosis, treatment and prevention of cancer. By accelerating the growth and spread of new knowledge about cancer, AACR is on the front lines of the quest for prevention and cure. 866.423.3965

Cancer Therapy Evaluation Program (CTEP): A research organization focused on improving the lives of patients with cancer by finding better ways to treat, control, and cure cancer. CTEP accomplishes this mission by funding an extensive national program of cancer research and by sponsoring clinical trials to evaluate new anti-cancer agents. CTEP works extensively with the pharmaceutical/biotechnology industry to effectively develop new cancer treatments.

National Institute of Health (NIH): NIH Clinical Center: Cancer Clinical Trials at the National Institutes of Health Clinical Center is the research hospital for the NIH, the Federal Government’s principal agency for biomedical research. Call the Clinical Trials Referral Office (CTRO) at 888.624.1937 weekdays between 9:00 a.m. and 5:00 p.m., Eastern time, to find out whether a clinical trial is available for a specific type of cancer. 800.411.1222

Human Research Subject Protection

Each of the following websites provides information on regulations in place to protect the rights of participants in clinical trials.

Alliance for Human Research Protection (AHRP): A national network of lay people and professionals dedicated to advancing responsible and ethical medical research practices, to ensure that the human rights, dignity and welfare of human subjects are protected, and to minimize the risks associated with such endeavors; provide a public awareness forum through education, media exposure, and appeals to conscience and social justice.

National Institutes of Health Office of Human Subjects Research (OHSR): The OHSR has been established to help NIH investigators understand and comply with ethical principles and regulatory requirements involved in human subjects research. 301.402.3444

Office for Human Research Protection (OHRP): Supports, strengthens and provides leadership to the nation’s system for protecting volunteers in research that is conducted or supported by the U.S. Department of Health and Human Services (HHS); provides clarification and guidance to research institutions, develops educational programs and materials, and promotes innovative approaches to enhancing human subject protections. 866.447.4777

U.S. Food and Drug Administration (FDA): The FDA is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science-based information they need to use medicines and foods to improve their health.


 

Complementary and Alternative Medicines

National Center for Complementary and Alternative Medicine (NCCAM): One of the 27 institutes and centers that make up the National Institutes of Health (NIH). It is dedicated to exploring complementary and alternative healing practices in the context of rigorous science, training complementary and alternative medicine (CAM) researchers, and disseminating authoritative information to the public and professionals. United States: 888.644.6226. International: 301.519.3153


 

Financial Assistance

Centers for Medicare and Medicaid Services (CMS): Administers the Medicare program, and works in partnership with the states to administer Medicaid, the State Children’s Health Insurance Program (SCHIP), and health insurance portability standards. CMS works closely with the Social Security Administration (SSA) to provide information about Medicare to beneficiaries applying for, or currently receiving, retirement or disability benefits at local SSA district offices.

Partnership for Prescription Assistance: The Partnership for Prescription Assistance brings together America's pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free. Among the organizations collaborating on this program are the American Academy of Family Physicians, the American Autoimmune Related Diseases Association, the Lupus Foundation of America, the NAACP, the National Alliance for Hispanic Health and the National Medical Association.  888.4PPA.NOW (888.477.2669)

Patient Advocate Foundation: The Patient Advocate Foundation is a national nonprofit organization that serves as an active liaison between patients and their insurers, employers and/or creditors to resolve insurance, job discrimination, and/or debt crisis matters related to their diagnosis. It seeks to safeguard patients through effective mediation, assuring access to care, maintenance of employment, and preservation of financial stability. 800.532.5274

Social Security Administration (SSA): Provides a monthly income for eligible elderly and disabled individuals. Information on eligibility, coverage, and how to apply for benefits is available from the Social Security Administration.


 

General Cancer Information/Support Organizations

American Cancer Society (ACS): An extensive network of information resources and organizations fighting cancer by providing information, education, support and research funding. 800.ACS.2345

Association of Cancer Online Resources (ACOR ): An Internet-based public charity dedicated to improve the quality of care provided to patients with cancer and the quality of life of patients, survivors and their caregivers. 212.226.5525

Cancer Care: A nonprofit, voluntary health agency devoted to education, research, and patient services relating to patients with cancer and their families. The organization's programs include individual and group counseling for patients and their families, bereavement services, financial assistance, and education programs. 800.813.HOPE

Cancer Hope Network: Provides free, confidential, one-on-one support to people with cancer and their families. The program is available to all patients with cancer and their loved ones from anywhere in the United States at no cost. 877.HOPENET

Cancer.net: The patient information website of the American Society of Clinical Oncology (ASCO) is designed to help patients and families make informed health care decisions. The site provides information on more than 120 types of cancer and cancer-related syndromes, clinical trials, coping, side effects, a "Find an Oncologist" database, patient support organizations, and more. (English and Spanish)

Cancer Research and Prevention Foundation:  A national, nonprofit health foundation whose mission is the prevention and early detection of cancer through scientific research, education and community outreach. The Foundation focuses its energies and resources on those cancers—including lung, breast, prostate, colorectal, cervical, skin, oral and testicular—that can be prevented through lifestyle changes or detection and treatment in their early stages. 800.227.2732

Cancersymptoms.org: This website is sponsored by the Oncology Nursing Society (ONS).  It is designed for patients and caregivers to provide information on learning about and managing each of ten cancer treatment-related symptoms that patients undergoing treatment for a cancer diagnosis commonly experience: anorexia, cognitive dysfunction, depression, dyspnea, fatigue, hormonal disturbances, neutropenia, pain, peripheral neuropathy, and sexual dysfunction.

Caring4Cancer: This web-based resource serves as a complete source of knowledge and support for people with cancer, empowering them with the expertise, strength and hope they need to live their lives to the fullest. Caring4Cancer combines a virtual encyclopedia of cancer information with a collection of powerful tools (including videos, message boards, and
e-newsletters) that help patients take an active role in managing their disease.

CURE: Cancer Updates, Research & Education is a unique quarterly magazine bridging the knowledge gap between patients with cancer and caregivers. CURE demystifies the science and medicine of cancer and gives readers links to important resources on the Web and in the medical community they won’t find anywhere else. CURE gives readers the tools they need to take action, such as participating in clinical trials of new drugs that could mean the difference between life and death. CURE was created by Cancer Information Group, LP, a physician-managed publishing company. 214.367.3500 Toll Free: 800.210.CURE (2872)

Fertile Hope: A national nonprofit organization dedicated to providing reproductive information, support, and hope to patients with cancer whose medical treatments present the risk of infertility. 888.994.HOPE

Gilda’s Club: Named in honor of Gilda Radner, a comedian who succumbed to ovarian cancer, Gilda's Club, a nonprofit organization, offers support and networking groups, lectures, workshops, and social events free of charge in nonresidential, home-like settings where people with cancer, their families, and friends join with others to build social and emotional support as a supplement to medical care. 888.GILDA.4.U

Lance Armstrong Foundation (LAF): Is a registered 501(c)(3) nonprofit organization located in Austin, Texas. Founded in 1997 by cancer survivor and champion cyclist, Lance Armstrong, the LAF inspires and empowers people with cancer. 512.236.8820

MyBiopsy.org: Patient oriented website developed by the College of American Pathologists (CAP) which features information on more than 20 of the most common cancers and cancer-related conditions. It includes answers to questions about what the disease is, what treatment options are available, questions you should ask your doctors, a definition of key terms, and pictures of a normal tissue as well as one that is diseased.

National Cancer Institute (NCI): Conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of patients with cancer and the families of patients with cancer. 800.4.CANCER

National Coalition For Cancer Survivorship (NCCS): A nonprofit national advocacy organization, NCCS is a nationwide network of independent organizations and individuals working in the areas of cancer support, education, and advocacy. 877.NCCS.YES

Pregnant with Cancer Network:The Pregnant with Cancer Network is a national non-profit organization for women diagnosed with cancer during pregnancy.  Our mission is to connect women who are pregnant with cancer with other women who have been pregnant with the same type of cancer.  These women are here to lend support, offer hope and share their experiences with one another through phone and e-mail conversation. 800.743.4471

The Cancer Project: The Cancer Project is a nonprofit organization advancing cancer prevention and survival through nutrition education and research. 202.244.5038

The Wellness Community (TWC): Is an international non-profit organization dedicated to providing education and resources to people affected by cancer. 202.659.9709


 

Hospice Care

National Hospice and Palliative Care Organization (NHPCO): NHPCO is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. (Spanish/English) 800.658.8898


 

International/Cultural Support Groups

American Cancer Society (ACS) Asian Language Materials: American Cancer Society site that provides resources and cancer information in several Asian languages including Chinese, Korean, and Vietnamese.

Canadian Cancer Society: A national, community-based organization of volunteers whose mission is the eradication of cancer and the enhancement of the quality of life of people living with cancer. 416.961.7223

Intercultural Cancer Council (ICC): Promotes policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the United States and its associated territories. 713.798.4617

International Union Against Cancer (UICC): UICC is an international nonprofit, nonsectarian, nongovernmental association of more than 290 member organizations in 85 countries. Their mission is to advance scientific and medical knowledge in research, diagnosis, treatment, and prevention of cancer throughout the world, especially professional and public education. +41 22 809 18 11

Make-A-Wish Foundation International: A not-for-profit organization established to grant wishes to children with life-threatening illnesses around the world. The Make-A-Wish Foundation can now be found in 30 countries and territories around the world. 602.230.9900

National Asian Women's Health Organization (NAWHO): NAWHO helps to raise awareness about the health needs of Asian Americans through research and education. They have health education programs for breast, cervical cancers, and reproductive health. 415.989.9747

World Health Organization (WHO): A specialized agency of the United Nations with 191 Member States, WHO promotes technical cooperation for health among nations, carries out programs to control and eradicate disease, and strives to improve the quality of human life. + 41 22 791 21 11


 

Travel Assistance

Angel Flight America: A nonprofit grassroots organization with a volunteer corps of more than 6,000 private pilots divided into six regions covering all 50 states and the District of Columbia. They transport patients and their families in private planes, free of charge, to hospitals for medical treatment. (United States Only) Toll Free: 877.621.7177

Corporate Angel Network Provides free air transportation for patients with cancer traveling to and from recognized cancer treatment centers in the United States without regard to their financial resources. 914.328.1313 Toll Free: 866.328.1313

Joe’s House: Joe’s House is a non-profit organization that serves both the hospital staff and cancer patients that travel for their healthcare needs.  Founded in 2003, Joe’s House assists in finding appropriate lodging in unfamiliar cities by providing a list of accommodations that cater to patients with cancer, their families, and caregivers.


 

Cancer/Support Organizations by Site

Bladder

American Urological Association Foundation (AUA): The AUA Foundation is the nation's leading urologic health charity that promotes research, education and advocacy. Their mission is to improve prevention, detection, treatment and ultimately, cure urologic diseases. 410.689.3700 or 866.746.4282 (Toll Free U.S. only)

Bladder Cancer Advocacy Network (BCAN): The first national advocacy organization dedicated to improving public awareness of bladder cancer, and increasing research directed towards the diagnosis, treatment and cure of the disease. Founded in May 2005, BCAN is a cooperative effort among bladder cancer survivors, their families, caregivers, and the medical community. One of their goals is that no one should ever have to feel alone when dealing with Bladder Cancer. 301.469.6865

Bone Marrow

Blood and Marrow Transplant Information Network: A nonprofit organization that provides publications and support services to bone marrow, peripheral blood stem cell, and cord blood transplant patients and survivors. All literature is written in lay language and reviewed for accuracy by a team of medical experts from transplant centers throughout the United States and Canada. 888.597.7674

National Marrow Donor Program: A nonprofit organization which facilitates unrelated donor stem cell transplants for patients of all racial and socioeconomic backgrounds with life-threatening blood diseases who do not have matching donors in their families. Provides advice, support, and access to resources and information throughout the search process, coordinates research studies, and provides one-on-one advocacy for patients and medical professionals. Donors and other inquiries: 800.MARROW.2. Patients and families: 888.999.6743; Outside the United States: 612.627.8140

Brain Tumors

American Brain Tumor Association: A nonprofit organization dedicated to eliminating brain tumors by funding and encouraging research. Provides educational materials and information to patients, their families, and medical professionals. 800.886.2282

Brain Tumor Society (BTS): An advocacy organization that improves the quality of life of brain tumor patients, survivors, and their families by providing access to psychosocial support, information, and resources.  BTS raises funds to advance carefully-selected research projects to enhance treatments and to find a cure. 800.770.TBTS (8287)

National Brain Tumor Foundation: NBTF is a national nonprofit organization providing information and support for brain tumor patients, family members, and health care professionals, while supporting research into better treatment options and a cure for brain tumors. 800.934.CURE

Breast Cancer

Breast Cancer Research Foundation (BCRF):  An independent 501 (c) (3) not-for-profit organization whose mission is to achieve prevention and a cure for breast cancer by providing critical funding for innovative clinical and genetic research at leading medical centers worldwide, and increasing public awareness about good breast health. 646.497.2600

Breastcancer.org: A nonprofit organization dedicated to providing the most reliable, complete, and up-to-date information about breast cancer. They help women and their loved ones make sense of the complex medical and personal information about breast cancer, so they can make the best decisions for their lives.

Breast Cancer Network of Strength: Breast Cancer Network of Strength™, formerly known as Y-ME National Breast Cancer Organization®, provides help, information, and education about breast cancer free of charge every day of the year on a 24-hour basis to anyone who has been touched by breast cancer. Their comprehensive breast cancer peer support program, Your Shoes™, includes trained counselors, real-time interpreters available in more than 150 languages for telephone conversations; match programs, support via e-mail; the ShareRing Network, a monthly, one-hour teleconference; and survivor-facilitated support groups. English: 800.221.2141; Spanish: 800.986.9505

Facing Our Risk of Cancer Empowered (FORCE): A nonprofit organization that provides resources and information for women with increased risk of breast and ovarian cancers, due to a family history and/or genetic status. FORCE is also a resource for members of families in which a BRCA mutation may be present. 866.824.RISK

Inflammatory Breast Cancer Research Foundation: A web-based organization dedicated to researching the cause of Inflammatory Breast Cancer (IBC), an advanced and accelerated form of breast cancer usually not detected by mammograms or ultrasounds. They provide e-mail discussion lists, an e-newsletter, volunteers who answer questions submitted to the website, articles, research information, videos, presentations, and inspirational stories on IBC.

National Breast Cancer Coalition: A grassroots advocacy organization consisting of more than 500 organizations and over 60,000 individuals from across the United States, dedicated to fighting breast cancer. Informs, trains, and directs patients and supporters in knowledgeable and effective advocacy efforts. 202.296.7477

Sisters Network, Inc.: A nonprofit African American breast cancer survivors’ organization. It promotes the importance of breast health through personal empowerment, support, breast education programs, resources, information, and research through its strong affiliate chapter base. 866.781.1808

Susan G. Komen Breast Cancer Foundation: The nation's largest private foundation dedicated solely to breast cancer research, education, screening, and treatment. 800.I’M AWARE

Young Survival Coalition (YSC): 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. Through action, advocacy and awareness, the YSC seeks to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women 40 and under. The YSC also serves as a point of contact for young women living with breast cancer. 877.YSC.1011

WomenStories: An organization that inspires, informs and supports patients with breast cancer by documenting and sharing survivors' experiences. Through a series of ten psychosocial videos, breast cancer survivors offer emotional support and advice that women need and value. The videos may be viewed as well as purchased on their site. 800.775.5790

Carcinoid Cancer/Neuroendocrine Tumors

Carcinoid Cancer Foundation, Inc.: The mission of this foundation is to conduct, encourage and support research and to educate the general public and health care professionals regarding carcinoid and related neuroendocrine tumors. 888.722.313

Childhood Cancers

Candlelighter’s Childhood Cancer Foundation (CCCF): CCCF, founded in 1970 by concerned parents of children with cancer to assist families and survivors of childhood cancer, has a network of parent support groups in the United States and on every continent. 800.366.2223

Children's Cause Cancer Advocacy (CCCA): A 501 (c) 3 non-profit organization that works as a national catalyst to stimulate drug discovery and development for childhood cancers, to expand resources for research and treatment, and to address the needs and concerns of survivors. 301.562.2765

CureSearch.org: Web site based on the combined efforts of the Children’s Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF), dedicated to research, advocacy, and fundraising for childhood cancers. United States and Canada: 800.458.6223

I’m a Kid Foundation: A nonprofit organization devoted to supporting children with medically related hair loss due to cancer, alopecia, AIDS, or other ailments.  702.269.5437

Make-a-Wish Foundation: Nonprofit organization dedicated to granting the wishes of children with life threatening medical conditions. 800.722.WISH

National Children’s Cancer Society (NCCS): The mission of NCCS is to improve the quality of life for children with cancer and to reduce the risk of cancer by promoting children's health through financial and in-kind assistance, advocacy, support services, and education. 800.5.FAMILY

Colon Cancer

Colon Cancer Alliance (CCA): A nonprofit organization of colon and rectal cancer survivors, their families, caregivers, people genetically predisposed to the disease, and the medical community dedicated to patient support, advocacy, and education. Helpline: 877.422.2030

Colorectal Cancer Network: This web site is intended to assist people with colorectal cancer, their family, friends, and caregivers find information to help them make decisions regarding treatment and management of their disease. 301.879.1500

C3: Colorectal Cancer Coalition: A national organization whose mission is to eliminate suffering and death due to colon and rectal cancer through advocacy. C3 pushes for research to improve screening, diagnosis, and treatment of colorectal cancer; for policy decisions that make the most effective colon and rectal cancer prevention and treatment available to all; and for increased awareness that colorectal cancer is preventable, treatable, and beatable. 703.548.1225

Gynecologic Cancers

Gynecologic Cancer Foundation: A nonprofit organization dedicated to ensure public awareness of gynecologic cancer prevention, early diagnosis, and proper treatment as well as supporting research and training related to gynecologic cancers. Includes access to resources containing information about ovarian, endometrial, cervical, vaginal, and vulvar cancers. Toll Free: 800.444.4441

National Cervical Cancer Coalition: An advocacy group dedicated to educating the public about cervical cancer prevention and outreach, new screening and treatment options, cervical cancer screening and follow-up programs, HPV, the limitations of the Pap smear AND its overwhelming success as a screening tool for clinicians. 800.685.5531

National Ovarian Cancer Coalition: Grassroots advocacy organization formed to raise awareness about ovarian cancer and to promote education about this disease. 888.OVARIAN

Ovarian Cancer National Alliance: Is a patient-led organization uniting ovarian cancer activists, women's health advocates and health care professionals in the effort to increase public and professional understanding of ovarian cancer and to advocate for more effective diagnostics, treatments and a cure. 202.331.1332

Women's Cancer Network Web Site: This premiere site, developed by the Gynecologic Cancer Foundation, offers a confidential risk assessment and comprehensive cancer information for lay public and survivors.

Head and Neck Cancer

Oral Cancer Foundation: A nonprofit advocacy organization that seeks to increase public and professional awareness of oral cancers. They promote lifestyle changes, early detection initiatives, education, improved treatment modalities, and provide a survivor/patient forum for the support of those patients and their families currently fighting this disease. 949.646.8000

The Yul Brynner Head & Neck Cancer Foundation, Inc.: The mission of the foundation is to provide support to head and neck patients with cancer and to educate children and adults in the disease process, treatment, and prevention of head and neck cancer; to support ongoing research in head and neck oncology. 843.792.6624

Support for People with Oral and Head and Neck Cancer (SPOHNC): SPOHNC is a patient-directed, self-help organization dedicated to meeting the needs of patients with oral and head and neck cancers. Offers information, support, and encouragement. 516.759.5333 or 800.377.0928.

Kidney Cancer

Kidney Cancer Association (KCA): KCA is a national nonprofit membership organization made up of patients, family members, physicians, researchers, and other health professionals which offers a broad range of services, including advocacy on behalf of patients, support of both public and private research, information, and education. 800.850.9132

Leukemia and Lymphoma

Leukemia and Lymphoma Society: Provides information, support, and guidance to persons living with leukemia, lymphoma, Hodgkin's disease, myeloma, and other blood-related cancers and to those involved in their care. 800.955.4LSA

Lymphoma Coalition: A non-profit network organization of lymphoma patient groups. This coalition is a global initiative dedicated to raising awareness of lymphoma.
E-mail: info@lymphomacoalition.org

Lymphoma Research Foundation (LRF): LRF creates, promotes, and supports lymphoma research and provides comprehensive educational and supportive programs for lymphoma patients and their families. 800.500.9976

The MaxFoundation (TMF): The Max Foundation is an international organization dedicated to improving the lives and survival rates of patients with blood-related cancers worldwide. TMF helps patients by facilitating access to treatment and providing care and support for those who have limited access to resources. 888.462.9368

Lung Cancer

American Lung Association (ALA): The oldest voluntary health organization in the United States, with a National Office and constituent and affiliate associations around the country. Founded in 1904 to fight tuberculosis, ALA today fights lung disease in all its forms, with a special emphasis on asthma, tobacco control, and environmental health. 800.LUNG.USA

Lung Cancer Alliance: A nonprofit organization dedicated to people living with lung cancer, improving the quality of their lives through advocacy, support, and education. (United States only) 800.298.2436

Lung Cancer Online Foundation (LCOF): The mission of The Lung Cancer Online Foundation (LCOF) is to improve the quality of care and quality of life for people with lung cancer by funding lung cancer research and providing information to patients and families.

National Lung Cancer Partnership: A non-profit organization dedicated to decreasing deaths due to lung cancer, and helping patients live longer and better, through research, awareness and advocacy. It is comprised of leading physicians, patient advocates, researchers, and lung cancer survivors.  The organization is ultimately working to advance lung cancer treatments for all patients, but currently, its efforts are focused on women. 608.233.7905

Lymphedema

National Lymphedema Network (NLN): An internationally recognized nonprofit organization providing 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. The NLN also supports research into the causes of and possible alternative treatments for lymphedema. 800.541.3259

Myelodysplastic Syndromes

The MDS Foundation: A multi-disciplinary international organization devoted to the prevention, treatment and study of myelodysplastic syndromes. This network provides patients with referrals to Centers of Excellence, contact names for available clinical trials, sharing of new research and treatment options between physicians, and extension of educational support to both physicians and patients. 800.MDS.0839.   

Myeloma

International Myeloma Foundation (IMF): IMF, a nonprofit organization, is dedicated to education, treatment, and research in multiple myeloma. 800.452.CURE United States and Canada. Outside the United States 818.487.7455

Multiple Myeloma Research Foundation (MMRF): International nonprofit foundation founded in 1998 with the mission of accelerating the search for a cure for multiple myeloma. Today, the MMRF is the number one private funder of myeloma-specific research and offers educational programs to patients and professionals worldwide. 203.972.1250

Pancreatic Cancer

The Lustgarten Foundation for Pancreatic Cancer Research: The mission of The Lustgarten Foundation is to advance the scientific and medical research related to the diagnosis, treatment, cure and prevention of pancreatic cancer. 866.789.1000 

Pancreatic Cancer Action Network (PanCAN): The Pancreatic Cancer Action Network (PanCAN) works to focus national attention on the need to find the cure for pancreatic cancer. PanCAN provides public and professional education that embraces the urgent need for more research, effective treatments, prevention programs, and early detection methods. PanCAN is the first national patient-based advocacy organization specifically focused on pancreatic cancer. 877.272.6226

Prostate Cancer

Alliance for Prostate Cancer Prevention: APCaP’s mission is to bring public and private business leaders, legislators, health providers and administrators, researchers, federal, state and local health officials and prostate cancer advocates into a coordinated cohesive forum to enhance and promote prostate cancer awareness, education, research and primary and secondary prevention programs. It has been created to support efforts to prevent the serious consequences of the disease itself for men who have not been diagnosed and are unaware of the deadly effects of prostate cancer.  888.50.APCAP or E-mail: info@apcap.org

National Prostate Cancer Coalition (NPCC): This web site provides information about the NPCC and access to prostate cancer resources. 888.245.9455 or 202.463.9455.

Prostate Cancer Foundation: A nonprofit public charity dedicated to finding cures and controls for prostate cancer and the world's largest private source of prostate cancer research funding. 800.757.CURE

PSA Rising: Prostate cancer news internet magazine which reports on prostate cancer treatments and research and maintains a forum for advocacy and grass-roots activism.

US-TOO! International, Inc.: An independent network of support group chapters for men with prostate cancer and their families. Offers fellowship, peer counseling, education about treatment options, discussion of medical alternatives without bias and increases public awareness of prostate disease. 800.80.USTOO

Rare Cancers

National Organization for Rare Diseases (NORD): A nonprofit voluntary health organization dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. 800.999.NORD

Sarcomas/GIST

GIST Support International (GSI):An all-volunteer, non-profit organization that reaches out to GIST patients and their families and friends to provide education and support. GSI promotes and encourages ongoing research in the quest for a cure for Gastrointestinal Stromal Tumor (GIST). 215.340.9374

Sarcoma Alliance: An advocacy organization that provides support, education, and guidance for patients/family members with sarcoma. Also provides patient materials, web links, support group locations, and other resources. 415.381.7236

Sarcoma Foundation of America: This foundation serves as an advocate for increased research to find new and better therapies to treat sarcoma patients.  It provides information and support to sarcoma patients and their families. 301-253-8687.

Skin Cancer

American Academy of Dermatology: A professional organization representative of all dermatologic associations. With a membership of over 13,700, it represents virtually all practicing dermatologists in the United States. Includes resource pages for various skin diseases including melanoma. 847.330.0230

Melanoma International Foundation (MIF): Provides support of melanoma programs for the prevention, early detection, and treatment of melanoma. 610.942.3432

Melanoma Research Foundation (MRF): MRF supports medical research for finding effective treatments and eventually a cure for melanoma. It educates patients and physicians about the prevention, diagnosis and treatment of melanoma and acts as an advocate for the melanoma community to raise the awareness of this disease and the need for a cure. 800.673.1290

Skin Cancer Foundation:The mission of The Skin Cancer Foundation is to reduce the incidence of skin cancer through the promotion of prevention, early detection, and effective treatment. 800.SKIN.490

Testicular Cancer

Malecare: (Prostate, Testicular, and Male Breast Cancer) Malecare is a web-based information portal developed by oncologists, psychologists and social workers to facilitate health care programs, that are free and open to the public. Malecare has workshops, lectures, treatment and support groups that provide cancer education to men, their loved ones, and their families. Patient information is presented in English, Spanish, Hebrew, French and Italian. 212.673.4920

Thyroid Cancer

Thyroid Cancer Survivors Association, Inc.: A national nonprofit organization advised by nationally recognized thyroid cancer specialists, educates and supports patients and families through its web site, support groups, person-to-person support, free newsletters, and low-iodine cookbook, workshops, and conferences. Toll-free: 877.588.7904


 

Professional Organizations/Resources

American Psychosocial Oncology Society: The mission of the American Psychosocial Oncology Society is to advance the science and practice of psychosocial care for people with cancer. APOS provides online education, free of cost, on the following topics: Multidiscplinary Training in Psycho-Oncology, Distress Management Training for Oncology Nurses, Cancer 101 for Mental Health Professionals and the Psychosocial Aspects of Cancer Survivorship.  APOS established a toll-free hot line for cancer patients or patient advocacy organizations to obtain referrals for local counseling and services throughout the U.S.  The referral program aims to connect patients to psychiatrists, psychologists, nurses, and social workers skilled in the management of cancer-related distress. 434.293.5350

American Society of Clinical Oncology (ASCO): A nonprofit organization, ASCO supports cancer research, especially patient-oriented clinical research. Membership is composed of clinical oncologists from all oncology disciplines and sub-specialties. 571.483.1300

American Society for Therapeutic Radiology and Oncology (ASTRO): An organization comprising more than 8,000 health care professionals that are dedicated to advancing the practice of radiation oncology by promoting excellence in patient care, providing opportunities for educational and professional development, and promoting research in the field. 800.962.7876

Association of Oncology Social Work (AOSW): A nonprofit, international organization dedicated to the enhancement of psychosocial services to people with cancer and their families. 215.599.6093

National Society of Genetic Counselors:An organization which promotes the genetic counseling profession as a recognized and integral part of health care delivery, education, research and public policy. Genetic Counselors can be searched by State, City, Counselor's Name, Institution or Areas of Practice or Specialization. Cancer genetic counselors are involved with individuals who have cancer or a family history of cancer.  nsgc@nsgc.org    

Oncology Nursing Society (ONS): A national professional organization of more than 30,000 registered nurses and other health care providers dedicated to excellence in patient care, education, research, and administration in oncology nursing. It's also the largest professional oncology association in the world. 866.257.4ONS


The information on this website is provided as a public service by the National Comprehensive Cancer Network (NCCN).

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T-Neg diag.5/07-40yo
Stage IIIa
Grade III
7/26 +nodes ax.
4-A/C pre-lumpectomy 2 Taxol post
+Tissue involvement
Finished Rad 4/08
DX of Advanced CTCL 2/09
Lansing,MI
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 10 2009 at 11:43am
Net,
 
Go to the rare diseases and you will not find TNBC...and yet TNBC is rare. Someone posted something like this many many months ago. TNBC is still not there. I think someone had called them? Was that you?
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 10 2009 at 5:26pm
Thank you Net, very nice list.
Stage 2 2003
Stage 1 2007
BRCA 1+
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