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Caregivers

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.

2-1-1

2-1-1 is the telephone number of a call center that offers information and provides referrals to health and human services for everyday needs and in times of crisis. Services vary from community to community.

Examples of service referrals include:

  • Basic human need resources: food banks, clothing, shelters, rent assistance and utility assistance
  • Physical and mental health resources: medical information lines, crisis intervention services, counseling, drug and alcohol intervention
  • Employment support: unemployment benefits, financial assistance, job training, transportation assistance and education programs
  • Support for older Americans and persons with disabilities: home healthcare, adult daycare, congregate meals, Meals on Wheels, respite care, transportation and homemaker services
  • Support for children, youth and families: childcare, family resource centers, summer camps and recreation programs, mentoring, tutoring and protective services.

Everyone in the U.S. (check the website for availability in your area)

http://www.211.org/

Alex’s Lemonade Stand Foundation (ALSF)

To change the lives of children with cancer through funding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer.

  • Travel For Care Program offers financial assistance to eligible families for travel for childhood cancer treatment at medical institutions in the U.S. and Canada.  Patient must be diagnosed by age 18 and be under 21 and in active oncology treatment following a relapse, or enrolling in or currently participating in a clinical trial for active oncology treatment or a treatment innovation not available at their local institution. Applications must be submitted by a social worker or medical representative. 
  • Childhood Cancer Treatment Journal is a free treatment organizer for families of childhood cancer to help parents keep track of important treatment information.
  • Ambassadors Program involves family members and friends of a childhood cancer hero who choose to get more involved with ALSF.
  • My Childhood Cancer: Survey Series aims to better understand how childhood cancer affects families.
  • SuperSibs Programs aim to comfort, encourage and empower siblings during their family’s battle against childhood cancer.
  • Offers a free guide for education professionals to help patients, their siblings, and classmates cope with a diagnosis or death in their school community.

Children with cancer and their families, caregivers, young adults, healthcare professionals and researchers related to childhood cancer

610-649-3034 or 866-333-1213 http://www.alexslemonade.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

Be The Match

To create an opportunity for all patients to receive the blood, marrow, or umbilical cord blood transplant they need; to provide free support, information and transplant-related resources 

  • Be The Match, operated by the National Marrow Donor Program (NMDP), manages the largest and most diverse marrow registry in the world; conducts research to improve transplant outcomes; provides legislative advocacy to protect patient access to care; provides clinical education for healthcare professionals
  • Certified oncology patient navigators and licensed social workers provide confidential, one-on-one support and reliable, easy-to-understand information from diagnosis through recovery.  Emotional support is provided through counseling and support groups as well as through connections with others who’ve been through transplant
  • Helps to access financial grants and insurance resources, including Be The Match grants
  • Provides personalized support to search for and join clinical trials, including the Jason Carter Clinical Trials Program.  Visit www.jcctp.org or call 888-814-8610 for details.

Patients, caregivers and families before, during and after a blood or marrow transplant (BMT), healthcare professionals, researchers

888-999-6743 or patientinfo@nmdp.org https://bethematch.org/

Cancer Hope Network

To provide one-on-one support to people undergoing treatment for cancer and their families.

  • Provides training to individuals who have recovered from cancer so they can be matched with cancer patients currently undergoing a similar experience.

People diagnosed with cancer and their families in the U.S.

877-467-3638 http://www.cancerhopenetwork.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/

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/

Caregiver Action Network

To promote resourcefulness and respect for the more than 65 million family caregivers across the country; to educate, support, empower and speak up for caregivers.

  • Formerly the National Family Caregivers Association
  • Family Caregiver Forum to connect with other caregivers to share support and advice
  • Peer Network offers over 100 volunteers in more than 40 states who are available to provide localized advice, information, and support
  • Story Project to share your own story and read the stories of others to open yourself to the idea that you are not alone as well as to learn how other caregivers have handled difficult challenges
  • Family Caregiver Toolbox provides tips, questionnaires, booklets, and organization tools
  • Offers 10 Tips for Family Caregivers on website
  • Listings of other caregiver organizations, home care agencies, advocacy organizations, senior living options, respite resources, and disease-specific websites
  • Coping with Alzheimer’s information and videos.

People in the U.S. who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age

301-942-6430 http://caregiveraction.org

CaringBridge

To amplify the love, hope, and compassion in the world, making each health journey easier; to ensure families can connect, share and receive support during any type of health event; to create a grateful, engaged community of volunteers, supporters and donors.

  • Offers protected, online space where you can connect, share news, and receive support 24/7
  • Family and friends can visit the site to stay informed and leave supportive messages
  • SupportPlanner is an online calendar that helps family and friends coordinate care and organize helpful tasks, like bringing a meal, offering rides, taking care of pets and other needs.

Anyone who is coping with illness and seeking online support and connections

651-789-2300 http:\\www.caringbridge.org

Caring.com

To provide information and support for people caring for aging parents, spouses and other loved ones.

  • Provides elder care information and support, including information about senior living options and in-home care
  • Offers an online section covering a wide variety of relevant caregiving-related topics (e.g. insurance, benefits, coping)
  • Offers one-on-one guidance with a Family Advisor at no cost.

Caregivers

800-973-1540 or Website https://www.caring.com/

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/

Eldercare Locator

To connect older adults and their caregivers with trustworthy support resources.

  • Links those who need assistance with state and local agencies on aging as well as community-based organizations that serve older adults and their caregivers
  • Provides information on topics such as housing, insurance, transportation, etc.
  • Is a public service of the Administration on Aging, an agency of the U.S. Administration for Community Living.

Older adults, caregivers in the U.S.

800-677-1116 or Website https://eldercare.acl.gov/Public/index.aspx

Family Caregiver Alliance

Family Caregiver Alliance is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.

  • Provides information on topics such as care strategies, stress relief, community resources, family issues and hands-on care

Families and friends providing long-term care at home

800-445-8106 http:\\www.caregiver.org

Get Palliative Care

To increase the availability of quality palliative care services for all people living with serious illness. 

  • Provides information about palliative care: specialized medical care which provides patients with relief from symptoms, pain and stress
  • Explains how palliative care helps people with specific diseases
  • Provides a directory of hospitals with palliative care teams
  • Offers videos, blog, printed material and other resources including a quiz to help individuals know if palliative care is right for them.

Patients with life-threatening illness and their caregivers

Website Only http://getpalliativecare.org/

Give an Hour

Give an Hour™ asks mental health professionals nationwide to literally donate an hour of their time each week to provide free mental health services to military personnel and their families. Individuals who receive services will be given the opportunity to give an hour back in their own community.

  • In addition to direct counseling services, the providers are working to reduce the stigma associated with mental health by participating in and leading education, training, and outreach efforts in schools and communities and around military bases.

U.S. troops and families affected by the wars in Afghanistan and Iraq and other post-9/11 conflicts

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

HelpPRO

To improve the public's access to the services of mental health clinicians and organizations. Our vision is that every person in America can readily find mental health services to meet their needs.

  • Therapist Finder carefully identifies users’ needs and interests and matches these with our therapists’ capabilities. Matching process increases the likelihood that users and therapists will make positive, lasting connections from their very first meeting. Database contains detailed information on thousands of mental health professionals, their services and their organizations across the country.

Anyone seeking mental health clinicians in the U.S.

800-652-0155 or website http://www.helppro.com/

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/

Lotsa Helping Hands

Lotsa Helping Hands offers free online tools designed to make life easier for caregivers and volunteers.

  • Provides a caregiver-focused online calendar, which enables members to schedule and sign up for tasks that provide respite for the caregiver (such as meals for the family, rides to medical appointments, and visits)
  • Allows communication with one another through message boards, posting personal blogs, sharing photos, and sending well wishes to the family
  • Coordinators can safely store and retrieve vital information for the family – from medical and health records to financial and legal documents
  • Caregivers benefit from the gifts of much needed help, emotional support, and peace of mind, while volunteers find meaning in giving back to those in need.

Patients, caregivers and volunteers worldwide

425-417-0546 http://www.lotsahelpinghands.com/

Momcology

To help empower, inform, and heal caregivers of children diagnosed with cancer through peer support and evidence-based programs.

  • Provides online communities for parents seeking peer connections
  • Retreat program offers a weekend of self-care,  peer connecting and the opportunity to develop the tools to obtain balanced living in the aftermath of a pediatric cancer diagnosis
  • Caregiver Coffee Breaks empower a parent to build an in-person or virtual peer support community
  • In-hospital support groups available in certain geographic areas
  • Connects caregivers to patient family engagement opportunities and approved caregiver studies.

Caregivers to children with cancer, healthcare professionals

Website or info@momcology.org https://momcology.org/

MPN Advocacy and Education International

To make a difference in the lives of those affected by myeloproliferative neoplasms.

  • Offers disease, treatment and clinical trial information
  • Website lists online and in-person support groups worldwide
  • Offers an email digest, educational events and webcasts
  • Provides outreach to the entire MPN community to grow awareness, understanding, and a better quality of life for MPN patients
  • Engages legislators and governmental bodies on behalf of their constituents to ensure the MPN Community is represented.

Patients with myeloproliferative neoplasms (Essential Thrombocythemia, Idiopathic Myelofibrosis, Polycythemia Vera), caregivers, professionals worldwide

517-899-6889 http://mpnadvocacy.com/

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 Resource Cancer Guides

To empower people who are suffering with life-altering diseases by giving them the most comprehensive and up-to-date guides to treatment and facilities for their disease free of charge.

  • Provides free educational materials, written for ease of understanding, in print and online.

Patients and caregivers

(913) 725-1600 http://www.patientresource.com/

PREPARE for your care

To ensure all people are prepared and able to make informed medical decisions for themselves and their loved ones and to have a voice in their health care.

  • Offers free easy-to-read advance directives for all 50 states in both English and Spanish
  • Information is available in a step-by-step program with video stories
  • Provides pamphlets, question guide, and movie with toolkit for group events
  • Offers a newsletter and links to related research topics

Patients, caregivers, survivors, healthcare professionals worldwide

Website or info@prepareforyourcare.org https://prepareforyourcare.org/welcome

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 Feather Foundation - Hope for Parents with Cancer

To provide emotional and practical support to parents who have cancer. 

  • Provides emotional support through online groups, guidance and tips on parenting with cancer and self-care
  • Offers resource list of other assistance available for parents with cancer
  • Parents with cancer who reside in New York or New Jersey may have a social worker or health professional inquire about possible one-time financial help toward childcare-related costs.

Parents with cancer in the US

(862) 702-9559 or Website https://www.thefeatherfoundation.org/

The Patient Story

To humanize every cancer diagnosis; to help improve quality of life and health outcomes

  • Gives cancer patients and caregivers a sense of calm and control by showing them what their lives may look like post-diagnosis with FAQ-type answers and simple yet detailed visuals like timelines
  • Provides cancer survivors a chance to share their stories with those who need that help the most, empowering them to help turn their experiences into something positive.

Patients with various types of cancer (including Hodgkin and Non-Hodgkin Lymphoma), caregivers and interested individuals

Website https://www.thepatientstory.com/

The Ulman Cancer Fund for Young Adults

The Ulman Cancer Fund for Young Adults enhances lives by supporting, educating and connecting young adults, and their loved ones, affected by cancer.

  • Offers programs and services providing cancer support, information on health and wellness, advocacy, and education specific to young adults dealing with cancer
  • Provides financial assistance for individuals within the geographic region we serve. Scholarships have some national eligibility
  • Promotes awareness through sports programs to empower individuals in the fight against cancer through active lifestyles
  • Some support provided is done in conjunction with other organizations to ensure the best outcomes.

Young adults aged 15 - 39 who are affected by cancer - through their own diagnosis or that of a loved one, primarily in the Baltimore, MD and Washington, DC areas

410-964-0202 http://ulmanfund.org/

Well Spouse Association

To advocate for and address the needs of individuals caring for a chronically ill and/or disabled spouse/partner. We offer peer to peer support and educate health care professionals and the general public about the special challenges and unique issues "well" spouses face every day.

  • Coordinates national network of support groups, hosts website, provides publications, holds conferences, and organizes respite weekends for caregivers.

Caregivers, professionals, general public

800-838-0879 http://www.wellspouse.org

WidowedParent.org

To support widowed mothers and fathers with children in the home.

  • Hosted by the UNC Lineberger Comprehensive Cancer Center, the website offers information for parents and children about dealing with grief plus an online list of resources and supports.

Widowed mothers and fathers with children in the home, professionals

Website only https://widowedparent.org/