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Survivorship

Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please email infocenter@lls.org. Because we want to be sure that our visitors find the most relevant resources, we encourage you to visit the organization's website for more detailed information.

American Cancer Society (ACS)

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
  • American Cancer Society’s Wig Bank - Provides free wigs from limited supply to needy patients suffering hair loss due to cancer treatment. Intended for those with insufficient insurance coverage for cranial prostheses (wigs).

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

800-227-2345 http://www.cancer.org/

Aplastic Anemia & MDS International Foundation

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
  • Online Community: MarrowCommunity.org is an online community for patients with bone marrow failure and their families. Members can connect with others, share resources, learn about upcoming events and have their questions answered.
  • 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
  • Travel Assistance: To ensure that patients can see a specialist to seek the best course of treatment. Financial aid may be available for U.S.-based patients with demonstrated financial need
  • Find A Specialist: online search tool.

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

800-747-2820 or help@aamds.org http://www.aamds.org

CancerCare

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.

  • Oncology social workers are available for telephone counseling services to provide support, information and resources to help in coping with cancer
  • Offers online support groups and educational publications
  • Cancer Out Loud: The CancerCare Podcast features conversations with people living with cancer, caregivers, survivors, loved ones and the bereaved
  • Connect Education Workshops in which leading experts in oncology provide up-to-date information in one-hour workshops over the telephone or online
  • Financial assistance for transportation, medications, home care, child care, or durable medical equipment may be available for patients in active treatment. Eligibility guidelines vary depending on diagnosis, gender and geographic location. Call for details
  • 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 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 (http://cancercarecopay.org/) or call 866-552-6729 for details.

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

800-813-4673 http://www.cancercare.org/

Cancer Legal Resource Center (CLRC)

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 as well as community groups, employers and health professionals in the U.S.

866-843-2572 http://cancerlegalresources.org/

Cancer Support Community (CSC)

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)
  • In partnership with Airbnb, patients who must travel at least 100 miles or more for treatment, and who meet a strict income guideline, may be eligible for free housing.  Call (877) 793-0498 for details.

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

888-793-9355 http://www.cancersupportcommunity.org/

Cassie Hines Shoes Cancer Foundation for Young Adults

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.

Adolescent and young adult cancer patients and survivors

Website https://www.cassiehinesshoescancer.org/

Centers for Disease Control and Prevention (CDC)

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.

Anyone seeking information on health

800-232-4636 http://www.cdc.gov

Childhood Cancer Guides

To serve the childhood cancer community by publishing 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
  • Website provides free monthly newsletters and articles.

Children with cancer and their families, survivors, health professionals

Website or info@childhoodcancerguides.org http://www.childhoodcancerguides.org/

Dear Jack Foundation

To provide impactful programming benefiting adolescents and young adults diagnosed with cancer; to improve quality of life; to create positive health outcomes from treatment to survivorship.

  • Breathe Now program is a yoga retreat for survivors ages 21 to 39 years (1 to 3 years from active treatment) and their partners (who were with them during treatment).  Includes healthy eating and sessions with a social worker to help couples get back to a balanced relationship and away from being patient and caregiver.
  • LifeList program is for 18-39 year old patients, currently undergoing treatment for a difficult cancer diagnosis, to make a wish list of positive activities, items and/or adventures.  Includes the opportunity to connect with others who have experienced similar journeys.

Young adult cancer patients and survivors in the US

Website https://www.dearjackfoundation.org/

Imerman Angels

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.

Anyone with cancer

877-274-5529 http://www.imermanangels.org/

Lacuna Loft

To encourage, empower and connect young adult cancer survivors and caregivers

  • Provides online support programs
  • Lifestyle information and resources
  • Creative workshops, writing group, Speaker Series, and more.

Young adult cancer patients, survivors, and caregivers, ages 18 to 45

Website https://lacunaloft.org/

LIVESTRONG Foundation

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 information on topics that influence the “physical, emotional and practical” effects of cancer
  • Provides free, confidential, one-on-one support to anyone affected by cancer, not just patients, through education, referrals and counseling services
  • Planet Cancer connects young adults and helps them access support, advocacy and resources.
  • LIVESTRONG Fertility - Dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility.
  • Maintains a list of LIVESTRONG Survivorship Centers of Excellence, which is comprised of National Cancer Institute(NCI) Comprehensive Cancer Centers
  • Offers The LIVESTRONG Guidebook to help cancer patients and survivors as they navigate the health care system.

Cancer patients and survivors in the U.S.

855-220-7777 http://www.livestrong.org/

National Cancer Institute's Cancer Information Service

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).

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

800-422-6237 https://www.cancer.gov/contact

National Coalition for Cancer Survivorship (NCCS)

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.

People touched by cancer in the U.S.

877-622-7937 http:\\www.canceradvocacy.org

National Comprehensive Cancer Network (NCCN)

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.

Patients, caregivers, health professionals

215-690-0300; 866-788-6226 for educational events http://www.nccn.org/index.asp

National LGBT Cancer Network

To improve the lives of LGBT cancer survivors and those at risk by educating the LGBT community about increased cancer risks and the importance of screening and early detection; training health care providers to offer more culturally-competent, safe and welcoming care; and advocating for LGBT survivors in mainstream cancer organizations, the media and research.

  • Resource library contains up-to-date research articles, webinars, videos, fact sheets, etc.
  • Maintains directories of LGBT-welcoming cancer screening facilities and cancer treatment facilities in the US
  • Provides LGBT cultural competency trainings for health and human service providers.

Cancer patients, survivors, caregivers, healthcare professionals in the US

212-675-2633 or Website https://cancer-network.org/

Patient Advocate Foundation (PAF)

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.

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

800-532-5274 http://www.patientadvocate.org/

Stupid Cancer

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.

Young adult cancer patients and survivors, caregivers

877-735-4673 https://stupidcancer.org/

Survivorship A to Z, Inc.

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.

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

Website only http://www.survivorshipatoz.org/

The Bone Marrow & Cancer Foundation

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.

  • 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 
  • Airbnb Open Homes Medical Stays offers free temporary housing for cancer and transplant patients and their caregivers
  • One-to-One Fund enables patients to reach out to family, friends and social networks for financial support
  • Scholarship Grants help make educational aspirations a reality for bone marrow, stem cell or cord blood transplant survivors
  • Clinical Care Counseling provides confidential individual and family supportive counseling, financial guidance and resource referrals for cancer, transplant patients, and family members
  • Ask the Expert enables individuals to anonymously pose questions concerning transplantation and to have them answered by transplant specialists
  • SupportLine links transplant patients and their families with volunteers who have gone through the transplant experience
  • Support Groups provide patients, families and caregivers the opportunity to share experiences and draw support from one another
  • Medical and Educational Handbooks provide comprehensive transplant information and resources

Transplant patients and families, caregivers, survivors

212-838-3029 or 800-365-1336 http://bonemarrow.org/

The National Children’s Cancer Society

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

  • Pediatric Oncology Program (POP) provides financial and emotional support to families throughout the United States during their child’s cancer treatment. Financial assistance for lodging, meals, transportation, health insurance and medical expenses not covered by insurance. (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.

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

314-241-1600 or 800-532-6459 http://www.thenccs.org

The SAMFund for Young Adult Survivors of Cancer

The SAMFund supports young adult cancer survivors in the U.S. as they recover from the financial impact of cancer treatment. Through direct financial assistance, in-person and online support, The SAMFund helps young adults move forward towards their personal, professional, and educational goals.

  • Grants cover a wide range of post-treatment financial needs (must be related to the cancer experience), such as current and residual medical bills, car and health insurance premiums, rent/mortgage, Continuing education, utilities, family-building expenses, gym memberships and mental health expenses
  • The 2-part application process is open in January and June of each year
  • Webinars provide information on a range of Young Adult issues and challenges including dealing with medical debt, employment, insurance, and fertility.

Young adult cancer survivors between the ages of 21 and 39, finished with active treatment and residents of the U.S.

617-938-3484 http://www.thesamfund.org/

Triage Cancer

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.

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

424-258-4628 or info@TriageCancer.org http://triagecancer.org/

True North Treks

To empower teens and young adults with cancer, and those who care for them, to live longer, healthier and more meaningful lives through free backpacking and canoeing treks in beautiful wilderness destinations.

  • Please see website for specific trek information, application details and fundraising requirements.
  • Participation may include additional outdoor activities, mindfulness meditation and yoga.

Young adult cancer survivors ages 18 to 39 and their caregivers in the United States.

Website http://www.truenorthtreks.org