Patient and Caregiver Resources
 Below is a list of additional resources that may assist you with your cancer journey. The sites listed here have been reviewed for accuracy and completeness.
Acinic cell carcinoma
Biomarkers & personalized medicine
Bladder cancer
Blood
Bone cancer
Brain cancer
Breast cancer
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Bosom Buddies of Arizona |
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11024 N. 28th Drive, Suite #200 Phoenix, Arizona 85029 |
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Phone: (602) 265-2776 |
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Hotline: (602) 231-6648 |
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Bosom Buddies-AZ provides support, education and advocacy for those diagnosed with breast cancer. Educational resources available at no charge include: PRP Breast Cancer Guide, PRP Metastatic Breast Cancer, PRP Her2+ and ER/PR+ Personalized Therapy Guide, and Bosom Buddies-AZ Navigating Your Breast Cancer Journey-Maricopa County Resources.
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Families Who Support Breast Cancer Survivors, Inc. |
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Families Who Support Breast Cancer Survivors, Inc. is a Non-Profit Corporation designed to assist Breast Cancer patients and their families with support, education and resources with the ultimate goal that they become Survivors for years and year to come. We are partners with all existing cancer organizations and participate and even sponsor events specifically designed to promote Breast Cancer and all Cancer awareness and raise funding to provide Mammograms and related medical assistance.
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FORCE: Facing Our Risk of Cancer Empowered |
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Mission:
To improve the lives of individuals and families affected by hereditary breast and ovarian cancer.
Description:
FORCE was founded on the principle that no one should have to face hereditary breast and ovarian cancer alone. We are the only national non-profit dedicated to improving the lives of individuals and families affected by hereditary breast and ovarian cancer.
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Mothers Supporting Daughters with Breast Cancer (MSDBC) |
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25235 Fox Chase Drive, Chestertown, MD 21620 |
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(410) 778-1982 |
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Special Services:
A national non-profit organization providing support to mothers whose daughters have breast cancer. Free educational materials tailored to mothers and daughters about breast cancer treatment and constructive ways for mothers to provide support are included. Mothers are “matched” with mother volunteers across the country based on the daughter’s clinical profile, age at diagnosis and anticipated treatment.
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Mission Statement:
Pink-Link is a nonprofit organization which connects breast cancer survivors online. 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. It’s like a Match.com for breast cancer survivors! We currently have over 4,000 members in all 50 states and internationally.
In addition to our survivor database, 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, skin care, alternative medicine and lymphedema (a condition associated with breast cancer). Our members can connect with each other through our member forum as well. Privacy and confidentiality are our number one concern.
All services provided on our website are completely free. We rely on the generosity of individual donors and corporations to fund our organization.
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Cancer education
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Association of Community Cancer Centers |
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The Association of Community Cancer Centers (ACCC) is the recognized leader and premier provider of resources for the entire cancer care team. ACCC helps oncology professionals adapt to today's complex challenges in the delivery of quality cancer care. ACCC works closely with members of Congress, government agencies, and other cancer care advocacy organizations to help assure patient access to quality cancer care, appropriate cancer therapies, and investigational trials.
Patient Tools:
On its website, www.accc-cancer.org, ACCC offers www.centerwatch.com/ctrc/accc/index.shtml a clinical trials resource center and a listing http://accc-cancer.org/cancer_care/patients/Aid.asp of organizations that provide travel aid and can help patients deal with their insurer, employer, and/or creditors. ACCC's www.accc-cancer.org/membership_directory/ membership directory of more than 700 cancer programs features information on the programs' facilities, research, staffing, support services, and more. ACCC also offers http://accc-cancer.org/education/cancerSurvivorship-Overview.asp cancer survivorship resources.
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PearlPoint Cancer Support |
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310 25th Ave N, Suite 103, Nashville, TN 37203 |
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(615) 467-1936 or (877) 467-1936 (toll-free) |
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Our Mission: To create a more confident cancer journey for adults anytime, anywhere
PearlPoint provides personalized guidance and compassionate support to any adult impacted by cancer, from the moment of diagnosis. Services, which complement medical care, are FREE of charge regardless of location and include: My PearlPoint, an innovative tool to track personalized information; an online Cancer Library with medically trusted articles, videos, and other resources on cancer and its treatment; clinical trial education and an easy-to-use clinical trial locator; nutrition consultations with registered dietitians; and one-on-one guidance from our supportive services professionals.
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Union for International Cancer Control |
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By signing the World Cancer Declaration you join a worldwide community that is calling on key decision makers to reduce the global cancer burden. Our goal is to gather 1,000,000 supporters for a Cancer Free World - we will present this support to the world’s leaders at the first UN Summit for Non Communicable Diseases (NCD's) in September 2011.
There has only been one UN General Assembly Special Session, focused on health since 1945; the announcement of next year's Special Summit on NCDs is an unprecedented step in the battle against cancer and represents an opportunity for our generation to eliminate cancer as a life-threatening disease for future generations.
Together we are stronger! Help us reduce the global cancer burden, join our campaign today!
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Carcinoid
Caregivers & support
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4th Angel Mentoring Program |
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(866) 520-3197 |
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The 4th Angel Mentoring Program is a survivorship program launched by The Scott Hamilton CARES Initiative that provides free and confidential telephone or e-mail support to cancer patients and their caregivers. Trained mentors, who are cancer survivors themselves or have been a caregiver to a cancer patient, offer guidance and support. The program ensures that participants are paired (matched) based on similar characteristics including gender, age, cancer diagnosis, and treatment type. Opportunities are also available for cancer survivors and their caregivers to volunteer as mentors. Please visit 4thangel.org or call 866-520-3197
Resource page: www.4thangel.org/Resources.aspx
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Friend for Life Cancer Support Network |
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4007 Kresge Way, Louisville, Kentucky 40207 |
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(502) 893-0643 |
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Mission:
To help persons recently diagnosed with cancer and their loved ones navigate the path through diagnosis, treatment and recovery by pairing them with a trained survivor of a similar experience so they can face cancer with someone who's been there.
Patient Tools:
-Persons diagnosed with cancer and caregivers receive one on one support by phone/e-mail by a trained peer navigator who has survived the same type of cancer and similar course of treatment.
-Speakers’ bureau for meetings in Louisville, KY area
-Refer to other cancer resources when necessary
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The Hope Light Foundation |
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908 Hazelvalley Drive, Hazelwood, MO 63042 |
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(314) 838-4959 |
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Mission/Strategy:
The Hope Light Foundation (HLF) is a nonprofit, public charity organization dedicated to communicating all-cancers awareness information to enable people to detect, diagnose and treat cancer early while in the organ of origin to enhance survivorship and save lives. The HLF uses evidence-based criteria to target high risk for cancer death communities and establish needs-based interventions.
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MyLifeLine.org Cancer Foundation |
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55 Madison St, Ste. 750, Denver CO 80206 |
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(303) 549-0405 |
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MyLifeLine.org encourages cancer patients and caregivers to create free, customized websites. Our mission is to empower patients to build an online support community of family and friends to foster connection, inspiration, and healing. The personal websites allow the patient to communicate easily and receive the help they need during and beyond cancer treatment.
Patient Tools: See an example of a personal website http://www.mylifeline.org/testsite/
Connecting Updates- Blog about your experience
Inspiring Messages- Receive messages from friends and family
Helping Calendar- Post help needed with meals, rides, visiting hours, etc.
Giving Angels- Create a financial assistance page
Learning Link – Educate your support network on your cancer
Laughing Medicine- Funny jokes and books to lighten the mood
Photo Gallery- Post pictures
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PearlPoint Cancer Support |
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310 25th Ave N, Suite 103, Nashville, TN 37203 |
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(615) 467-1936 or (877) 467-1936 (toll-free) |
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Our Mission: To create a more confident cancer journey for adults anytime, anywhere
PearlPoint provides personalized guidance and compassionate support to any adult impacted by cancer, from the moment of diagnosis. Services, which complement medical care, are FREE of charge regardless of location and include: My PearlPoint, an innovative tool to track personalized information; an online Cancer Library with medically trusted articles, videos, and other resources on cancer and its treatment; clinical trial education and an easy-to-use clinical trial locator; nutrition consultations with registered dietitians; and one-on-one guidance from our supportive services professionals.
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Cervical cancer
Chemotherapy
Childhood cancer
Clinical trials
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PearlPoint Cancer Support |
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310 25th Ave N, Suite 103, Nashville, TN 37203 |
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(615) 467-1936 or (877) 467-1936 (toll-free) |
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Our Mission: To create a more confident cancer journey for adults anytime, anywhere
PearlPoint provides personalized guidance and compassionate support to any adult impacted by cancer, from the moment of diagnosis. Services, which complement medical care, are FREE of charge regardless of location and include: My PearlPoint, an innovative tool to track personalized information; an online Cancer Library with medically trusted articles, videos, and other resources on cancer and its treatment; clinical trial education and an easy-to-use clinical trial locator; nutrition consultations with registered dietitians; and one-on-one guidance from our supportive services professionals.
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Colorectal cancer
Communication support
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CaringBridge |
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1715 Yankee Doodle Road, Suite 301 |
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Eagan, MN 55121 |
651.452.7940 :: main
651.789.2300 :: customer care |
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If you or someone you know is in a cancer journey, use CaringBridge to easily communicate and stay connected.
CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. CaringBridge websites offer a personal and private space to communicate and show support, saving time and energy when health matters most.
Each site includes a place to post health updates and photos as well as a guestbook for visitors to leave messages of support. A personal CaringBridge website brings family and friends together online, surrounding a patient and their caregiver with love, hope and compassion. Learn more at www.CaringBridge.org.
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Complementary programs & alternative medicine
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Touch, Caring and Cancer |
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3986 N Shasta Loop |
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Eugene, OR 97405 |
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541.632.3502 |
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One of the most comforting forms of support you can offer a loved one with cancer is the use of touch.
Developed with support from the National Cancer Institute, The Touch, Caring and Cancer program provides inspiring and authoritative video instruction in safe and simple techniques that anyone can learn and apply. Available in English, Spanish and Chinese versions. Learn more at www.PartnersInHealing.net.
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Directories to resources
Drug research updates
Early detection
Elderly
Esophageal cancer
Ethnic & religious
Fertility and cancer
Financial assistance
Gastrointestinal cancer
Gynecologic cancer
Head & neck cancer
Hospice & home care
Kidney cancer
Laryngeal
Leukemia & lymphoma
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Cutaneous Lymphoma Foundation |
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PO Box 374, Birmingham, MI 48012-0374 |
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(248) 644-9014 |
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The Cutaneous Lymphoma Foundation is an independent, non-profit patient advocacy organization dedicated to supporting every person with cutaneous lymphoma by promoting awareness and education, advancing patient care and facilitating research.
We invite you to support our important work by designating donations you make to the Combined Federal Campaign (CFC #12294) and the United Way (UW #042972) to the Cutaneous Lymphoma Foundation. Thank you in advance for your support! For more information on the many ways you can become involved and support our life-changing mission, please visit http://www.clfoundation.org/.
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The Leukemia & Lymphoma Society |
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1311 Mamaroneck Avenue, Suite 310, White Plains, New York 10605 |
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Information Resource Center (IRC): (800) 955-4572 |
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The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding leukemia, lymphoma and myeloma research and providing patient education and financial and support services. LLS has free patient education and support booklets in English and Spanish. Contact our master's level Information Specialists for up-to-date information and support, Monday through Friday, 9 a.m. to 6 p.m. ET at (800) 955-4572 or email infocenter@LLS.org. Information Specialists help patients work with their doctors to find out about specific clinical trials. You can also use TrialCheck®, an online clinical trial search service supported by LLS that offers patients and caregivers immediate access to listings of blood cancer clinical trials.
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The National CML Society (formerly Carolyn's Hope) |
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130 Inverness Plaza #307, Birmingham, Alabama 35242 |
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(877) 431-2573 |
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The National CML Society (NCMLS) is a non-profit organization created by Chronic Myelogenous Leukemia (CML) patients and caregivers in the United States - people just like you who have experienced the news of a CML diagnosis. Through our initiatives, we provide opportunities to learn about CML, participate in ground-based support communities (CML Connection™), interface with leading CML specialists (Ask the CML Experts™), foster research, and celebrate life!
Our Ask the CML Experts™ Portal allows patients, caregivers, and medical professionals to submit their unique questions and have them reviewed by the nation's leading specialists treating CML.
Let us help you get your bearings and chart a course for the future.
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Patients Against Lymphoma |
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3774 Buckwampum Road, Reigelsville, PA 18077 |
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(610) 346-8419 |
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We provide online support forums (including on Facebook), and a comprehensive resource on lymphoma: www.Lymphomation.org. Our content is determined by patient questions. Our research objective is make consideration of clinical trials routine, in order to accelerate progress against lymphomas.
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Liver cancer
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The Cholangiocarcinoma Foundation |
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5526 West 13400 South, #510, Salt Lake City, UT 84096 |
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(801) 999-0455 |
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The Cholangiocarcinoma Foundation is a nonprofit leading the way in collaboration, understanding, research and education within the bile duct cancer community. We exist to find a cure and improve the quality of life for those affected cholangiocarcinoma. Visit our web site, www.cholangiocarcinoma.org, to find help for newly diagnosed patients, major cancer centers treating cholangiocarcinoma, patient support including forums connecting patients and caregivers to one another and more.
Every hour that has gone into The Cholangiocarcinoma Foundation has been volunteered. We are working to support research to find a cure. We invite you to support our important work through donations to: The Cholangiocarcinoma Foundation. Thank you in advance for your support!
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Lung cancer
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Caring Ambassadors Lung Cancer Program |
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P.O.Box 1748 |
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Oregon City, Oregon 97045 |
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(503) 632-9032 |
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Mission:
The Caring Ambassadors Lung Cancer Program , mission is to help improve the lives of those affected by lung cancer through advocacy, information, and support. We hope to provide this information so that patients and their loved ones can make informed decisions about their lung cancer treatment options and supportive care.
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Lymphedema
Melanoma & other skin cancers
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The Joanna M. Nicolay Melanoma Foundation, known as “the voice for melanoma prevention, detection, care and cure,” seeks to: support medical research that will ultimately lead to a cure for melanoma; educate the general public on prevention and the seriousness of melanoma; and, be a resource for patients and the entire melanoma community.
See our accomplishments!
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Mental health services
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American Psychosocial Oncology Society (APOS) Helpline: (866) 276-7443
Multiple myeloma
Myelodysplastic & aplastic
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Myelodysplastic Syndromes Foundation |
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4573 South Broad St., Ste. 150, Yardville, NJ 08620 |
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(800) MDS (637)-0839 |
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Special Services:
The MDS Foundation is an international organization devoted to patient support, research, treatment, and education in the myelodysplastic syndromes (MDS). The Foundation is based on the premise that international cooperation will accelerate the process leading to the control and cure of MDS. The Foundation, through our current network of 152 Centers of Excellence worldwide, provides referrals for patients, disseminates information on research and treatments, provides educational programs for patients, caregivers, physicians, nurses and health care providers, and supplies funding/oversight for international studies in MDS.
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Oral cancer
Ovarian cancer
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The Gilda Radner Familial Ovarian Cancer Registry |
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Roswell Park Cancer Institute, Elm and Carlton Streets, Buffalo, NY 14263 |
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(800) 682-7426 |
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Mission Statement:
The Gilda Radner Familial Ovarian Cancer Registry research goals are to identify new genes associated with familial ovarian cancer, to improve genetic and psychosocial counseling about lifestyle choices that reduce ovarian cancer risk in women who may be more susceptible to the disease. The registry is acquiring information that will lead to better methods for detecting ovarian cancer and for reliable testing for ovarian cancer predisposition.
Description:
We are an international registry of families with two or more relatives with ovarian cancer. We are collecting family histories, medical records and biological samples from these families. The registry offers a newsletter, ovarian cancer informational brochures and an ovarian cancer informational hotline for women with high risk of ovarian cancer – 1-800-OVARIAN.
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Pain management
Pancreatic cancer
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Hirshberg Foundation for Pancreatic Cancer Research |
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2990 S. Sepulveda Blvd., Suite 300C, Los Angeles, CA 90064 |
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(310) 473-5121 |
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Founded in 1997, the Hirshberg Foundation for Pancreatic Cancer Research is a national, nonprofit organization dedicated to advancing pancreatic cancer research, and providing information, resources and support to pancreatic cancer patients and their families.
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The Lustgarten Foundation |
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Toll free: (866) 789-1000 |
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The nation’s largest private supporter of pancreatic cancer research, The Lustgarten Foundation is dedicated to advancing the science and providing patients, caregivers and health care professionals with free, accurate information. Thanks to Cablevision Systems Corporation’s commitment to underwrite all of The Foundation’s administrative expenses, 100% of every dollar donated goes directly to pancreatic cancer research.
Patient Tools
Recognizing the unique challenges faced by individuals with pancreatic cancer, The Lustgarten Foundation provides comprehensive education materials free by request. Bulk orders are also available at no cost to health care professionals. Materials include:
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Understanding Pancreatic Cancer: A Guide for Patients and Caregivers (Link: www.lustgarten.org/patienthandbook
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Clinical Trial Matching Service (Link: www.lustgarten.org/clinicaltrials) in partnership with EmergingMed
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Interview With An Expert (Link: www.lustgarten.org/expertinterviews) patient information series
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Patient advocacy
Pediatric brain cancer
Prostate cancer
Radiology
Rare cancers
Research
Sarcoma
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The Sarcoma Alliance |
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775 East Blithedale, #334, Mill Valley, CA 94941 |
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(451) 381-7236 |
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The Sarcoma Alliance provides guidance, education and support to everyone affected by all types of sarcoma. We have a website providing diagnosis and treatment information including links to other sarcoma organizations. We have a bulletin board, a chat room, a peer to peer program and provide grants for getting second opinions.
Key Web Address:
Following are links to our key programs. Our Discussion Board (http://sarcomaalliance.org/discussion-board/) has a number of forums for people with different interests or questions. We have a moderated Chat (http://sarcomaalliance.org/chatroom/) on Wednesday and Sunday. Finally, we have a Peer to Peer Program (http://sarcomaalliance.org/peer-to-peer/) and provide financial grants for second opinions (http://sarcomaalliance.org/financial-assistance/).
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Skin cancer
Stomach Cancer
Testicular cancer
Thyroid cancer
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ThyCa: Thyroid Cancer Survivors' Association Inc. |
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Description:
ThyCa: Thyroid Cancer Survivors' Association, Inc., a national nonprofit 501 (c) (3) organization advised by thyroid cancer specialists, educates and supports patients and families through its web site, support groups, person-to-person support, free patient information packets, free newsletters, free Low-Iodine Cookbook, workshops, and conferences. ThyCa sponsors Thyroid Cancer Awareness Month, plus thyroid cancer research fundraising and research grants. E- mail thyca@thyca.org, phone (877) 588-7904, fax (630) 604-6078, write ThyCa, PO Box 1545, New York, NY 10159-1545, Web site: www.thyca.org
Free Online Tools from ThyCa:
Free Low-Iodine Cookbook
English: www.thyca.org/Cookbook.pdf
Spanish: www.thyca.org/CookbookEsp.pdf
Free Newsletter: www.thyca.org/guestbook.htm
Information for People Newly Diagnosed with Thyroid Cancer: www.thyca.org/newly_diagnosed.htm
Free Patient Information Packet: www.thyca.org/packet.htm
Awareness Materials: www.thyca.org/awareness.htm
Free Publications: www.thyca.org/downloads.htm
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Women’s health
Young adults
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I'm Too Young For This! Cancer Foundation |
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Founded in 2007 by young adult survivors and for young adult survivors, the I'm Too Young For This! Cancer Foundation is the nation's leading grassroots advocate for the next generation of cancer survivors and their caregivers in their late teens, 20s and 30s. A TIME Magazine Best 50 Website for 2007, we have helped bring the cause of 'cancer under 40' to the national spotlight and rallied a brand new generation of activists to ensure prompt detection, advocacy, research and support for this forgotten population.
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More Information
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