Survivorship

People affected by a cancer internationally; programs and services offered to patients and caregivers residing in the United States

In the U.S., ACS is a community-based voluntary health organization dedicated to eliminating cancer as a major health problem.

• Provides educational materials both online and in print about cancer, including blood cancers, as well as related information on topics such as diet, exercise, complementary and alternative medicine, and disease statistics
• Offers support services via online discussion boards and in-person support groups through local chapters
• Cancer Survivors NetworkSM, a global online community, transcends geographic boundaries and builds bonds among cancer survivors and caregivers through shared experiences and feelings
• Road to Recovery, a program offered locally by some chapters, has volunteer drivers who transport patients to and from treatment appointments
• Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges.

Patients and families living with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases

To support, connect and educate patients, caregivers and health professionals on bone marrow failure diseases worldwide

• Free educational materials: Information on research, treatment, and clinical trials
• Online Academy: Live webinars, webcasts, interviews with experts, and interactive learning modules
• Peer Support Network: Patients and caregivers can speak with trained patient volunteers who share treatment experiences and provide emotional support
• Community Connections: Volunteer-led regional support groups connecting patient and families
• Educational Conferences: Our free conferences in cities around the country offer learning opportunities from leading medical experts, and the ability to connect directly with other patients and caregivers
• Find A Specialist: online search tool.
   

Individuals, families, caregivers and the bereaved in the U.S. affected by a cancer diagnosis

To provide free, professional support services to individuals, families, caregivers and the bereaved to help them cope with and manage the emotional and practical challenges of cancer. (English and Spanish)

• Professional resource navigators and oncology social workers are available to provide telephone resource navigation to people living with cancer, post treatment survivors, and caregivers affected by cancer.
• Offers short term counseling to residents of NY and NJ. 
• Offers online support groups, educational programs, and local community support programs.
• Healing Hearts Family Bereavement Camp - a free retreat for families with children coping with the loss of a loved one to cancer
• Financial assistance for transportation, home care, childcare, pet care (through PAW program), or medication/durable medical equipment may be available for patients in active treatment. Eligibility guidelines vary depending on diagnosis, gender, and geographic location. 
• Financial assistance for insured cancer patients in treatment in the US to help with co-payments for chemotherapy and targeted treatment medications who meet certain financial, medical and insurance eligibility criteria. Check the website for funding availability (http://cancercarecopay.org/) or call 866-552-6729 for details.

People diagnosed with cancer, caregivers, and professionals in the U.S.

Cancer.Net brings the expertise and resources of the American Society of Clinical Oncology (ASCO) to people living with cancer and those who care for and care about them.

• Cancer.net website provides patient-focused information produced by ASCO
• Offers a toll-free helpline to people with cancer, their caregivers, family members, and friends to assist them in finding resources that may assist in their search for information.

People affected by cancer as well as community groups, employers and health professionals in the U.S.

To provide information and resources on cancer-related legal issues to cancer patients, survivors, caregivers, health professionals, employers, and others coping with cancer.

• CLRC offers a national, toll-free telephone assistance line where callers can receive free and confidential information about relevant laws and resources for their particular situation. It is a program of the Disability Rights Legal Center, based in Los Angeles, CA.

• Provides free educational materials on its website, webinars, in-person workshops and trainings on cancer-related legal issues.

People affected by cancer in the U.S. and Canada

To provide support, education and hope to people affected by cancer; to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.

• Offers support through a network of more than 52 local affiliates and 175 locations
• Cancer Support Helpline® - offers resources and emotional support via phone or live chat, and is staffed by licensed mental health professionals
• MyLifeLine - create a private, personal webpage to help keep family and friends stay involved and informed
• Frankly Speaking About Cancer® – education series that provides trusted information on a variety of topics important to people affected by cancer; information is available in a variety of formats
• Virtual Home - resources to connect you to education, support, and action opportunities to enhance your health and well-being from the comfort of your computer
• Open to Options – provides general information about clinical trials, helps patients identify important questions about treatment options and decisions based upon personal needs
• CancerSupportSource® - a tool that assesses distress in key areas (such as sleep, nutrition, worry about the future) and provides referral and follow-up care for all patients
• Cancer Experience Registry - a unique online community that brings people impacted by cancer together to make their voices heard, connect with each other, share experiences, learn from and help others
• Cancer Transitions – an evidence-based programs for cancer survivors who have completed their treatment (in partnership with LIVESTRONG)
   

Adolescent and young adult cancer patients and survivors

To guide young adults with cancer to social support programs and services that can help them manage their mental healing as well as their physical battle.

• Survivorship program in Northern Michigan consists of 6 days of adventure-based learning at no cost
• Travel Assistance for young adults to attend an approved survivorship program in the US
• Annual Base2Summit Scholarship for a Michigan resident who is accepted to an accredited school of higher learning; see website for details
• Lists a variety of survivorship resources related to support, finances, legal, etc.

Anyone seeking information on health

Collaborating to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats; is part of the U.S. Department of Health and Human Services and is the primary federal agency for conducting and supporting public health activities in the U.S.

• Monitors health, detects and investigates health problems
• Conducts research to enhance prevention and implements prevention strategies
• Develops and advocates sound public health policies
• Promotes healthy behaviors and fosters safe and healthful environments
• Provides leadership and training.
• Cancer Survivorship - CDC works with public, non-profit, and private partners to create and implement strategies to help the millions of people in the U. S. who live with, through, and beyond cancer.

Children with cancer and their families, survivors, healthcare professionals

As a part of Alex’s Lemonade Stand, the childhood cancer community publishes books that provide information, support, and resources. 

• Books feature stories from parents, children with cancer, and survivors of childhood cancers
• Covers various types of childhood cancers and their treatments, emotional support, helpful resources
   

Pediatric cancer survivors, families, healthcare professionals, and advocates

Children’s Cancer Cause is a leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families.

• Offers college scholarship for pediatric cancer survivors who demonstrate a commitment to cancer advocacy
• Provides information and resources for pediatric cancer survivors and families
• Supports research and advocacy efforts across the country
   

Adolescent and young adult cancer patients, survivors, caregivers, and healthcare professionals worldwide

To help adolescent and young adult (AYA) patients, survivors, and caregivers know they are not alone in their fight with cancer

• Provides a free quarterly print magazine and online site with stories and experiences written by young adult cancer patients and survivors
• Offers digital programs and events to bring the AYA community together to interact and empower each other
• Collaborates with AYA organizations across the US.

Anyone with cancer

To provide personalized connections that enable one-on-one support among cancer fighters, survivors and caregivers.

• Provides a unique matching program in which a “Mentor Angel” is partnered with an individual seeking cancer support. These one–on–one relationships inspire hope and offer support from someone who is uniquely familiar with the experience.

Cancer patients, survivors, and caregivers in the U.S.

To inspire and empower people affected by cancer; to provide support to guide people through the cancer experience, bring them together to fight cancer—and work for a world in which their fight is no longer necessary.

• Provides free, confidential, one-on-one support to anyone affected by cancer, not just patients, through education, guidance, and referrals.
• Offers The LIVESTRONG Guidebook and other materials to help cancer patients and survivors as they navigate the health care system.
• Additional resources include a prescription discount card, cancer-focused education resources for teachers/families, and cancer survivor exercise programs through the YMCA. 
• LIVESTRONG Fertility - Dedicated to providing reproductive information, resources and financial support to survivors whose cancer and its treatment presents risks to their fertility.

Cancer patients, caregivers, family, friends, healthcare providers, researchers

To provide accurate, up-to-date, and reliable information on cancer that is easy to understand; this free service is a federally funded cancer education program.

• Offers trained information specialists who can answer cancer-related questions on a range of cancer topics (but is not a substitute for medical advice).

People touched by cancer in the U.S.

To advocate for quality cancer care for all people touched by cancer.

• Advocates for changes in how the nation researches, regulates, finances and delivers quality cancer care
• Empowers cancer survivors through its publications and programs, which provide tools for self-advocacy
• Convenes other cancer organizations to address nationwide public policy issues affecting cancer survivors
• Cancer Survival Toolbox is a free, self-learning audio program to help people develop important skills to better meet and understand the challenges of their illness.

Patients, caregivers, health professionals

To improve the quality, effectiveness, and efficiency of cancer care so that patients can live better lives.

• Alliance of leading cancer centers
• NCCN Guidelines provide comprehensive and frequently updated clinical practice guidelines
• NCCN Guidelines for Patients® translate the information that doctors use to help patients and families understand treatment options
• Offers educational programs and webinars
• Articles and videos give advice on how to help a loved one with cancer and take care of oneself.
• Incorporates treatment guidelines and limited recommendations for surveillance and management of common issues facing survivors.

People in the U.S. with chronic, life-threatening and debilitating illnesses

To provide professional case management services to Americans with chronic, life threatening and debilitating illnesses.

• PAF Case Managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis; may also be assisted by doctors and healthcare attorneys. PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
• Offers PAF authored publications and content, distributes booklets and publications
• Offers an annual scholarship program for survivors
• PAF Co-Pay Relief Program provides direct financial assistance to insured patients who meet certain qualifications to help them pay for the prescriptions and/or treatments they need. This assistance helps patients afford the out-of-pocket costs for these items that their insurance companies require. For details, call 866-512-3861.

Young adult cancer patients and survivors, caregivers

To empower, support, and improve health outcomes for the young adult cancer community

• Offers CancerCon - an annual 4-day gathering which includes informational workshops, educational breakout sessions, group discussions, networking opportunities, and social activities
• Organizes meet-ups - volunteer-hosted social gatherings of local groups of survivors
• Hosts the Stupid Cancer Show - a YouTube Channel featuring interviews with survivors, informational episodes, and radio show content
• Offers an online community including regional Facebook groups, online forums, blogs, and social media
• Stupid Cancer Summit: free, one-time events hosted at cancer centers to share information, provide resources, and bring together the local young adult survivor community
• Lists other organizations that provide financial, legal, reproductive, and other assistance.

People living with cancer or HIV/AIDS and their caregivers, health professionals

To provide people with a life challenging condition such as cancer or HIV/AIDS with all the practical, legal and financial information they need through the entire continuum after a diagnosis.

• Online resource for information about employment, insurance, finances, government programs, day to day living, medical care, planning ahead, emotional well-being.

Cancer and transplant patients and families, caregivers, survivors

To improve the quality of life for cancer and transplant patients and their families by providing vital financial assistance, comprehensive resources, educational information, physician referrals, and emotional support programs.

• CancerBuddy provides a user-friendly digital experience to help people affected by cancer across the US find buddies, share experiences and resources, provide support, and build a supportive community of peers
• Clinical Care Counseling provides confidential individual and family supportive counseling, financial guidance and resource referrals for cancer, transplant patients, and family members
• Patient Navigators provide guidance and support to anyone faced with a cancer diagnosis or needing a bone marrow transplant
• Ask the Expert enables individuals to anonymously pose questions concerning transplantation and to have them answered by transplant specialists
• Lifeline Fund provides financial support to help cover the costs of donor searches, medications, home and child care services, medical equipment, transportation, cord blood banking, housing costs and other expenses associated with transplant
• Carelines provides social media tools for crowdfunding, journaling and a volunteer task calendar for anyone with a cancer diagnosis or receiving a bone marrow, stem cell or cord blood transplant 
• Your Transplant Journey Handbook provides comprehensive transplant information and resources
   

Children with cancer and their families, caregivers, survivors, health professionals

To improve the quality of life for children with cancer and their families worldwide.

• Provides financial and emotional support to families throughout the United States during their child’s cancer treatment. Financial assistance includes transportation fund and emergency assistance fund (See website for specific financial eligibility criteria.)
• The "Beyond the Cure" Survivorship Program (BTC) provides the most up-to-date information on survivorship to help survivors and their families adapt and celebrate life after diagnosis
• Online community provides a private network for parents, caregivers and survivors of childhood cancer to connect, share and offer support to one another
• Beyond the Cure Ambassador Scholarship Program awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation; call or see website for details
• Provides resources to healthcare professionals involved in the treatment of childhood cancer and the many challenges associated with survivorship
• Global Outreach Program partners with pharmaceutical companies to distribute donated cancer treatment drugs and medical supplies around the world.
   

Cancer patients, survivors, caregivers, advocates, and health professionals

To help navigate cancer survivorship from the point of diagnosis throughout life, by providing education on all types of cancer survivorship topics

• Offers free in-person and online educational events, a speakers bureau, and online educational materials and tools. Resources cover a wide array of topics including guides on reasonable accommodations, chemo brain, insurance, employment, finances, etc.