Below is a list of resources that we have found to be unique and useful. We don’t endorse any of the sites and consultation with your healthcare team is always good advice. Please be aware that Web Addresses that end in .org are usually designated as not for profit sites associated with not-for-profit organizations. They will have business and commercial sponsors to help cover the cost of maintaining a site and they will not have advertisements, promotions or products on their sites or as pop-ups. Sites that end in .com are owned by commercial entities and will have products and services to sell, there-by paying for the cost of the site. Commercial sites can have useful information.
UNC just launched a website for parents who have lost a spouse or partner and are raising children on their own. There are precious little resources for widowed parents and we hope the site serves as a helpful and timely guide during a very difficult time. www.widowedparent.org
At ConsumerAffairs we’ve created a guide to help those impacted by hair loss navigate through the wig buying process. The guide educates readers on important features to consider when selecting a wig such as type, size, material and style. It also compares brands and retailers using expert and consumer reviews. https://www.consumeraffairs.com/wigs/#guide-features
Quackwatch is an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. To help visitors with special areas of interest, they maintain 23 additional sites for autism, chiropractic, dentistry, multilevel marketing, and many other hot topics. They are also closely affiliated with the National Council Against Health Fraud, which cosponsors their free weekly newsletter, and with Bioethics Watch, which highlights issues of questionable research on humans. The Internet Health Pilot site provides links to hundreds of reliable health sites. And their Casewatch site contains a large library of legal cases, licensing board actions, government sanctions, and regulatory actions against questionable medical products.
The U.S. National Library of Medicine (NLM) is the world’s largest medical library. It has millions of books and journals about all aspects of medicine and health care on its shelves. Its electronic services deliver trillions of bytes of data to millions of users every day.The NLM was founded in 1836 and is part of the National Institutes of Health (NIH) in Bethesda, Maryland.
Cancer.net is an Oncologist-approved cancer information from the American Society of Clinical Oncology (ASCO)
Coupon Chief Retail Savings Guide for People with Disabilities.
Men Against Breast Cancer is the first national non-profit 501(c)(3) organization designed to target and mobilize men to be active participants in the fight to eradicate breast cancer as a life threatening disease.
The Ovarian Newsletter started by ovarian survivor and maintained by the family. There are email versions available.
Cancer Care is a free, professional support for anyone affected by cancer
www.accc-cancer.org Links to issues, advocacy and information affecting Oncology offices and practices
ACSH’s mission is to ensure that peer-reviewed mainstream science reaches the public, the media, and the decision-makers who determine public policy. Their objective is to restore science and common sense to personal and public health decisions, in order to foster a scientifically sound and sensible public health policy for the American people.
The focus of the R.A. Bloch Cancer Foundation Foundation is to help all cancer patients in the process to successfully conquer their disease. Founded Annual June Cancer Survivor’s Day Celebration.
Cancer and Careers is a Resource and Community for People with Cancer and their Employers, Coworkers and Caregivers.
Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital has had a profound influence on The Wellness Community and the work associated with Mind-Body research.
The mission of The University of Texas MD Anderson Cancer Center is to eliminate cancer in Texas, the nation, and the world through outstanding programs that integrate patient care, research and prevention, and through education for undergraduate and graduate students, trainees, professionals, employees and the public.
NCCS advocates for quality cancer care for all people touched by cancer and provides tools that empower people to advocate for themselves. Founded by and for cancer survivors, NCCS created the widely accepted definition of survivorship and defines someone as a cancer survivor from the time of diagnosis and for the balance of life. NCCS advocates for quality cancer care for all Americans and provides tools that empower people affected by cancer to advocate for themselves. Founded by and for cancer survivors in 1986, NCCS created the widely accepted definition of survivorship and considers someone a cancer survivor from the time of diagnosis through the balance of life. Its free publications and resources include the award-winning Cancer Survival Toolbox, a self-learning audio program created by leading cancer organizations to help people develop essential skills to meet the challenges of their illness. 1-888-650-9127.
The mission of Prevent Cancer Foundation is cancer prevention and early detection through research, education and community outreach to all populations, including children and the underserved. The Prevent Cancer Foundation envisions a future where cancer incidence and mortality will be significantly reduced through preventive measures.
Carcinoid.org includes the most comprehensive and up-to-date repository of information about carcinoid and neuroendocrine tumors. You should be able to find just about any information you’re seeking about these diseases, including information about doctors, support groups, treatment, clinical trials and a wide variety of resources.
Susan Anderson’s site personalizes the picture of people affected by this disease.
Eyes on the Prize Welcome to our online support group for gynecologic cancer survivors! Women with cervical, uterine (endometrial an sarcoma), ovarian, vaginal, vulvar, gestational, and tubal cancer join together to share information and emotional support for living with reproductive cancers.
Foundation for Women’s Cancer links to many sites valuable to women.
Below are links to Sharing the Journey Online & Tools that help patients and families. Communicate and lighten the load by using these online services to share information and gain support.
CaringBridge, Primarily a site for sharing news, thoughts, etc. with friends and family about the patient.Site is not searchable for your name; users must know the URL address to your personal site. Updates and photos may be posted; visitors may sign an online guestbook to leave messages for you. You can customize your site with different backgrounds. Not just for a cancer diagnosis.
My LifeLine, Primarily a site for sharing news, thoughts, etc., but also has a calendar to let people know what’s happening when and to help recruit volunteers for tasks (driving, babysitting, etc.).
Updates and photos may be posted; there’s an online guestbook and a calendar.
Specifically for patients with a cancer diagnosis.
Lotsa Helping Hands, primarily a care coordination site; Practical stuff is better managed and can also use it to post updates and photos, and there’s an online guestbook as well. More sophisticated calendar available, with real-time volunteer sign-ups for meals, rides, etc. They have the tools. Not just for a cancer diagnosis
CarePages, Primarily a site for sharing news, thoughts, etc. with friends and family. Site is searchable for your name, if you choose; there are three levels of security to choose from. Updates and photos may be posted; visitors may sign an online guestbook to leave messages for you. Very plain site; no real customization available. Not just for a cancer diagnosis.
Disability Benefits Guide
Social Security disability benefits can provide for your family when an injury, illness, or disability prevents you from working and earning an income. Applying for these benefits is often seen as a cumbersome process, however, requiring several steps, a slew of complicated paperwork, and even in-person hearings.
This guide will explain how Social Security disability benefits work while helping you determine whether your disability, illness, or chronic condition is enough to qualify. We’ll walk you through each step of the process, and tell you what to expect during each stage of your Social Security disability application. Meanwhile, our disability benefits calculator will help you get an estimate of how much you might collect from Social Security disability or SSI if your case is approved.
End of Life
Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life. Since 2004 Caring Connections has provided more than 1.3 million advance directives to individuals free of charge. Caring Connections:
- Provides free resources and information to help people make decisions about end-of-life care and services before a crisis.
- Brings together community, state and national partners working to improve end-of-life care through a national campaign called It’s About How You LIVE.
Inter-Institutional Collaborating Network On End-of-life Care (IICN) international collaboration
Growth House, Inc is an international gateway to resources for life-threatening illness and end of life care. Their primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration. They provide free access to over 4,000 pages of high-quality education materials about end-of-life care, palliative medicine, and hospice care, including the full text of several books.
Cancer Care can help with costs such as: Transportation to and from cancer treatment, Home care, Child care, Pain medication, Lymphedema supplies (breast cancer only). If you need assistance with chemotherapy or targeted treatment co-payments, please visit the CancerCare Co-Payment Assistance Foundation
Beckstrand Cancer Foundation is a nonprofit organization dedicated to improving and enhancing quality of life for cancer patients and their families. In addition to the physical pain suffered by those afflicted with cancer, often comes an unsurpassed emotional pain associated with the diagnosis. Fear, anxiety and uncertainty regarding what the future holds can suddenly complicate normal work routines and family obligations. Resources for needs such as rent, utilities, health insurance, food, transportation and medical co-payments can quickly become a major challenge in the cancer patient’s fight for survival. That’s why offering solutions to the seemingly ordinary needs of everyday life is Beckstrand Cancer Foundation’s mission.
Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. Patient Advocate Foundation (PAF) was established in 1996 as a national 501(c)3 organization with a mission of safeguarding patients with chronic, life threatening, and/or debilitating illnesses assuring access to care, maintenance of employment and preservation of their financial stability. Through this work, its patients have come to rely upon PAF as the providers of educational tools and direct support which allow them to gain access to quality healthcare.
The Healthwell Foundation provides copayment and premium payment assistance to eligible individuals. So, if you’ve been prescribed a medication, but are unable to afford the copayment required by your insurer, they may be able to help by paying some or all of your copayment. Also, if you are eligible for health insurance, but cannot afford the insurance premium, they may be able to help by paying some or all of your insurance premium
Patient Access Network (PAN) Foundation is an independent non-profit organization that provides assistance to underinsured patients for their out-of-pocket expenses for life-saving medications. 90 cents of every dollar donated to PAN goes directly to our patients. Since 2004, PAN has awarded hundreds of millions of dollars in assistance to patients in need. We offer help and hope for a healthy tomorrow for the growing underinsured population struggling with increasing out-of-pocket treatment costs. Our operational excellence ensures quick access to treatment and supports patients’ continuity of care.
Patient Services, Inc. (PSI) is the “ground breaking” 501(c)(3) non-profit, charitable organization of its kind. Two decades ago, we recognized the importance of providing a “safety net” for patients with chronic illnesses who were struggling to keep up with expensive premiums and co-payments. Since 1989 we have led the charge to provide much needed patient assistance, soliciting donations to fund thousands of patients and their families in a myriad of disease areas. Today we’re flattered by our emulators (other similar foundations) who demonstrate just how critical the need continues to be.
The Prostate Conditions Education Council (PCEC) was founded in 1989, and is a non-profit 501-3c organization. A national organization committed to men’s health, PCEC is the nation’s leading resource for information on prostate health
Us TOO International Prostate Cancer Education & Support Network is a grassroots, registered 501(c)(3) non-profit prostate cancer education and support network of 325 support group chapters worldwide, providing men and their families with free information, materials and peer-to-peer support so they can make informed choices on detection, treatment options and coping with ongoing survivorship. The organization was founded in 1990 by five men who had been treated for prostate cancer.
CAM:Complimentary & Alternative Sites
Belleruth Naparsek’s site sells R&V tapes and has very good web links
Worldwide Health Center is the Internet’s Largest WORLDWIDE Directory of Natural or Alternative Medical Information, Practitioners, Associations, Schools, Educational Institutes and more! Not aligned to any manufacturer, retailer, or clinic therefore unbiased. We have simplified the process of buying the best natural products by ‘hand picking’ them for you from the huge range of products sold. This way you always get the best and most effective products for your money that are known to work through the experiences of Natural Medicine practitioners.
The National Center for Complementary and Alternative Medicine (NCCAM) is 1 of the 27 institutes and centers that make up the National Institutes of Health (NIH). The NIH is one of eight agencies under the Public Health Service (PHS) in the Department of Health and Human Services (DHHS). Our mission is to support rigorous research on complementary and alternative medicine (CAM), to train researchers in CAM, and to disseminate information to the public and professionals on which CAM modalities work, which do not, and why.
Osher Center for Integrative Medicine has been in existence since 1997, the UCSF Osher Center for Integrative Medicine has become a premier integrative health resource for the San Francisco Bay Area and beyond. The first program of its kind to offer fully developed programs in research, education and patient care, the Osher Center is meeting the needs of patients who seek a healing-oriented approach to healthcare.
They combine modern science, wise tradition, and human connection to create a powerful new medicine centered on a simple concept–self-care. They teach thousands to heal millions – and by teaching the teachers first, they see individuals, families and communities everywhere reconnecting with themselves and one another to embrace the richness of our human experience. The Center teaches scientifically-validated mind-body medicine techniques that enhance each person’s capacity for self-awareness and self-care to health professionals around the world, including those in traumatized communities in the greatest need.
Food, Herbs & Nutrition, etc
The American Dietetic Association, the world’s largest organization of food and nutrition professionals, has become the Academy of Nutrition and Dietetics.
Dietitians in Integrative and Functional Medicine (DIFM), a dietetic practice group of the Academy of Nutrition and Dietetics. We are a group of nutrition professionals with special interests in integrative, functional and holistic medicine, nutritional genomics, whole foods, dietary supplements and natural healing modalities.
The American Botanical Council (ABC) was incorporated in 1988 and is the leading nonprofit educational and research organization disseminating science-based information that promotes the safe and effective use of medicinal plants and phytomedicines.
The Herb Research Foundation is the world’s first and foremost source of accurate, science-based information on the health benefits and safety of herbs—and expertise in sustainable botanical resource development.
The United States Pharmacopeial Convention (USP) is a scientific nonprofit organization that sets standards for the identity, strength, quality, and purity of medicines, food ingredients, and dietary supplements manufactured, distributed and consumed worldwide. USP’s drug standards are enforceable in the United States by the Food and Drug Administration, and these standards are developed and relied upon in more than 140 countries.
The FDA‘s organization consists of the Office of the Commissioner and four directorates overseeing the core functions of the agency: Medical Products and Tobacco, Foods, Global Regulatory Operations and Policy, and Operations. FDA regulates both finished dietary supplement products and dietary
The Center for Food Safety (CFS) is a non-profit public interest and environmental advocacy membership organization established in 1997 for the purpose of challenging harmful food production technologies and promoting sustainable alternatives. CFS combines multiple tools and strategies in pursuing its goals, including litigation and legal petitions for rule-making, legal support for various sustainable agriculture and food safety constituencies, as well as public education, grassroots organizing and media outreach.
Make a Wish Foundations
Dream Foundation grants requests to adults age 18 and over whose life expectancy, confirmed by their physicians, is one year or less.
Memories Of Love’s goal is to provide a treasured family time where children with an ill parent can return home with a suitcase full of special memories to be unpacked and relived for many years to come. Memories of Love is a 501(c)(3) non-profit service organization supported by companies and contributors from the general public.
A Special Wish Foundation, Inc is a non-profit charitable organization dedicated to granting the wishes of children under the age of 21 and diagnosed as having a life- threatening disorder.
Sunshine Foundation’s sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children, ages three to eighteen, whose families cannot fulfill their requests due to the financial strain that child’s illness may cause.