Find Support to Help You on Your Journey
A desmoid tumor diagnosis can impact many aspects of your life and the lives of your family members. Thankfully, programs to support patients and caregivers are out there. We have curated these resources, with input from the community, to provide you with a valuable list of places to turn to as you navigate this disease.
Download the new DTRF Patient Brochure to learn more about desmoid tumors. Share the brochure with your physician, caregivers, and loved ones to increase knowledge and awareness of desmoid tumors.
Featured Resources
DTRF Patient/Caregiver Support & Initiatives
Dealing with Desmoids: Mental Health Tools for Desmoid Tumor Patients
Our “Dealing with Desmoids” webinar series aims to support the mental health of our desmoid tumor patient and caregiver community. These live and recorded sessions offer tools from a Licensed Clinical Social Worker (and desmoid tumor patient) to support your mental health as you navigate the emotions that can come with this diagnosis – and any other of life’s challenges.
Social Security Benefits & Insurance
The Social Security Disability Resource Center
Applying and getting approved for Social Security Disability (SSD) benefits with a desmoid-related disability can be tricky! This information helps clarify how your condition is viewed by the SSA and offers guidance on maximizing the information in your application. Frequently asked questions about Social Security Disability Insurance (SSDI)
Patient/Caregiver Support
Cancer Wellness Center
Serving the Northbrook, IL area, seeks to improve the emotional and physical well-being of people affected by cancer, through supportive care and education. Its offerings include lectures and workshops, wellness classes, counseling, young adult programs, and more.
DTRF Patient/Caregiver Support & Initiatives
Knowledge is power. Make sure you’re in the know on the latest desmoid tumor research, clinical trial announcements, community news, virtual networking events, patient resources, and more by signing up for our newsletter.
Join your community every September for our annual weekend events, which include the DTRF Annual Patient Meeting. Empower yourself with knowledge as experts in desmoid tumors present to you on the latest treatments and research and answer your questions. Connect with other patients and caregivers at the Community Networking event, then celebrate the community and raise funds for research at the DTRF RFA 5K & Kids Fun Run!
The DTRF Virtual Tumor Board is a quarterly teleconference allowing physicians from anywhere in the world to discuss their desmoid tumor cases with leading specialists in the field and receive input. If you have reached a wall in your desmoid treatment, or your physician is unsure what path to take next and time is of the essence, your case may be eligible for review.
Our “Dealing with Desmoids” webinar series aims to support the mental health of our desmoid tumor patient and caregiver community. These live and recorded sessions offer tools from a Licensed Clinical Social Worker (and desmoid tumor patient) to support your mental health as you navigate the emotions that can come with this diagnosis – and any other of life’s challenges.
Mental Health Resources for Patients & Caregivers
Mental health is just as important as physical health. Explore these curated mental health resources for support.
**If you are in crisis, call the U.S. National Suicide & Crisis Lifeline by dialing 988. For international hotlines, go here**
Online Desmoid Patient Communities & International Advocacy Groups
You are not alone! Connect with your desmoid tumor patient and caregiver community online and across the globe. Find online support groups based on geography, language, or experience, as well as local organizations advocating on behalf of patients in your region.
Financial & Medication Assistance
SpringWorks Therapeutics CareConnections™ Patient Support Program offers support for patients who have been prescribed OGSIVEO. It provides insurance navigation and financial help, as well as personalized educational and emotional support.
Are you looking for a scholarship for our annual Together We Will Weekend?
The Rare Disease Education Support Program is designed to offer rare disease patients, their families and/or caregivers an opportunity to participate in educational programs and conferences that offer rare disease content. NORD’s program provides financial support for registration costs and limited assistance with associated travel and lodging costs for conference participation.
Research shows the value of second opinions by sarcoma experts. A second opinion is when a patient seeks an evaluation from another physician to assess and make recommendations regarding a patient’s current diagnosis, treatment, and/or follow-up. This evaluation may be from a medical oncologist, pediatric oncologist, surgeon (surgical oncologist or orthopedic oncologist), radiation oncologist, and/or pathologist.
The Bayer U.S. Patient Assistance Foundation offers a way to obtain Bayer prescriptions at no cost. It also offers access to other Bayer programs.
HealthWell Foundation is a leading non-profit dedicated to improving access to care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. Its online application process can be initiated here.
Scholarships and Support for College Students with Cancer,Cancer Survivors and Family Members
21st Century C.A.R.E is a not-for-profit foundation that provides financial assistance to cancer patients in FloridaThis allows the patient to put their focus where it belongs – on beating the disease. Call 239-936-3756 for more information.
American Cancer Society. Whether you or someone you love has cancer, knowing what to expect can help you cope. From basic information about cancer and its causes to in-depth information on specific cancer types – including risk factors, early detection, diagnosis, and treatment options – you’ll find it here.
BenefitsCheckUp is a comprehensive, free online tool that connects older adults with benefits they may qualify for. The service is provided by the National Council on Aging (NCOA), a respected national leader and trusted partner helping older adults meet the challenges of aging.
CancerCare. A cancer diagnosis turns a person’s world upside down — emotionally, physically and financially. CancerCare® can help patients, survivors, loved ones and healthcare professionals by providing counseling, support groups, education and financial/co-pay assistance. It offers limited financial assistance for cancer-related costs and co-pays, and its professional oncology social workers can help you find additional resources.
The Fiscal Tiger – Medical Debt Resources: Get Help Affording and Paying for Healthcare. If you are worried you can’t pay for healthcare, you aren’t alone. Nearly everyone is affected by medical debt: even those with insurance can struggle to pay medical bills, and every year as many as 1 in 5 Americans have trouble covering their healthcare expenses. It is the most common cause of bankruptcy in the United States, even more so than consumer debt. Whether or not you already have health insurance, there are resources available to help you make ends meet, and get the medical treatment you and your family need. This information can help you deal with everything from debt collectors, to gaps in insurance coverage, and even how to negotiate bills with the hospital.
LIVESTRONG Foundation provides direct services for the more than 32.6 million people around the world affected by cancer. It connects people and communities with the services they need, and calls for state, national and world leaders to help fight the disease. Click here to access information and details on the organization’s resources for assistance with financial and insurance issues.
National Human Genome Research Institute provides a resources portal for those seeking financial assistance for medical costs and insurance premiums. (It is not authorized to provide routine medical assistance.) It is suggested that individuals seeking assistance visit the websites listed frequently, as new information and resources may become available.
NeedyMeds is a non-profit organization dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs. It provides a portal for accessing government programs, free/low cost clinics, prescription assistance services and more. The information at NeedyMeds is available free of charge and privacy protected.
Patient Access Network Foundation is focused on ensuring that under-insured patients living with life-threatening, chronic and rare diseases get the financial assistance they need so they can start focusing on what matters most: their health. Visit the website to access its patient portal.
Accessia Health provides financial support and guidance for qualified patients with specific, rare chronic diseases. Through Accessia Health assistance programs patients and their families rediscover hope and health. The organization provides financial assistance to eligible individuals, including: subsidizing the cost of health insurance premiums; providing pharmacy and treatment copayment assistance; assisting with Medicare Part D coinsurance; and providing travel assistance for transportation reimbursement.
RXAssist boasts the Web’s most current and comprehensive directory of patient assistance programs, run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. The organization offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need.
RxHope offers a helping hand to people in need, for obtaining critical medications that they would normally have trouble affording. The organization acts as an advocate in making the patient assistance program journey easier and faster, by supplying vital information and help with the process.
Stupid Cancer is a leading U.S. organization in young adult cancer advocacy, research, and support. Its mission is to empower, support, and improve health outcomes for the young adult cancer community.
Free / Discounted Travel & Lodging for Medical Treatment & Support
The Air Care Alliance (ACA) is a 501(c)(3) nonprofit public service organization representing a nationwide network of volunteer pilot groups that deliver impactful and inspiring service through aviation. By encouraging volunteerism among pilots, the ACA helps patients access free air transportation, and ensures that charitable aviation remains a viable resource to those who need it most.
Each American Cancer Society Hope Lodge offers cancer patients and their families a free, temporary place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows Hope Lodge guests to focus on the most important thing: getting well.
The Sarcoma Alliance has curated a list of resources providing financial assistance for those facing a sarcoma diagnosis.
American Cancer Society is on a mission to free the world from cancer. They are there to help-24 hours a day, 7 days a week for emotional support, latest cancer information, ride to chemo or place to stay when treatment is far away. This website provides information from every angle.
- Support Programs & Services in your area (including patient lodging programs and rides to treatment)
Corporate Angel Network is available for patients needing to travel for treatment, consultation, clinical trial or checkup. Patients can be accompanied by a family member/ companion. Financial eligibility is not required. For eligibility and questions, call 866-328-1313.
Mercy Medical Angels can provide either air or ground transportation services for patients. For eligibility and questions, call 888-675-1405.
Lifeline Pilots will transport patient residents living between the Rocky Mountains and the East Coast. They will travel anywhere within the U.S., up to a maximum of 1,000 miles. Flights to our Patient Meeting would be considered “compassion” flights, so not top priority, but definitely worth requesting. For eligibility and questions, call 1-800-822-7972.
Patient AirLift Services (PALS) is a 501c3 non profit that arranges FREE air transportation for individuals needing medical diagnosis or treatment. Our network of volunteers provide this service without reimbursement or compensation. Our primary area of geographic coverage is the entire northeast U.S. and down the eastern seaboard.
American Cancer Society is on a mission to free the world from cancer. They are there to help- 24 hours a day, 7 days a week for emotional support, latest cancer information, rides to chemo or places to stay when treatment is far away. This website provides information from every angle.
- Support Programs & Services in your area (including patient lodging programs and rides to treatment)
Believe in Tomorrow Children’s Foundation offers hospital housing for children- and their families- being treated at Johns Hopkins. They also offer respite housing for families free of charge to renew their energy and spirit throughout their child’s exhausting medical treatment.
Joe’s House is a nonprofit organization providing a nation-wide online service that helps cancer patients and their families find lodging near treatment centers.
Social Security Benefits & Insurance
Social Security Administration pays disability benefits to people who can’t work because they have a medical condition that is expected to last at least one year, or result in death.
The Social Security Disability Resource Center is a non-government organization founded by former disability claims examiner Tim Moore. Its goal is to educate individuals about how the Social Security Disability and SSI Disability process works from start to finish. This includes what to expect before, during, and after a disability application has been processed, common mistakes that need to be avoided, and what to do and how to react in specific situations.
COVID-19 Related Resources & Support
From vaccine guidance for desmoid tumor patients to programs that help patients and caregivers impacted by the pandemic, we’ve curated COVID-19 related resources for our community.
Sarcoma & Cancer Organizations
American Cancer Society is on a mission to free the world from cancer. They are there to help 24 hours a day, 7 days a week for emotional support, the latest cancer information, rides to chemo, or a place to stay when treatment is far away.
- Support Programs & Services in your area (including patient lodging programs and rides to treatment)
- Understanding health insurance
SarcomaHelp.org empowers patients and their loved ones to understand and deal with specific types of sarcoma and to discuss potential treatment options with their medical teams. Topics include: What sarcoma support is available in my area, What sarcoma-specific support is available online, What financial and general cancer support is available online.
The mission of the Liddy Shriver Sarcoma Initiative is to improve the quality of life for people dealing with sarcoma. The Initiative increases public awareness of sarcoma, raises money to award sarcoma research grants, and provides support and timely information to sarcoma patients, their families, and medical professionals. These efforts are achieved through collaboration with numerous individuals and organizations that share a similar vision. More sarcoma support services here.
Cancercare is the leading national organization providing free professional support services and information to help manage the emotional, practical and financial challenges of cancer. All services provided by oncology social workers and world-leading cancer experts. Cancercare offers counseling, support groups, and educational workshops. They offer financial assistance to eligible individuals for treatment-related costs such as transportation, home care and childcare. Cancercare Co-Payment Assistance Foundation can help with copays for chemotherapy and targeted treatment drugs.
Sarcoma UK provides answers to questions about sarcoma and they have a support line for those facing sarcoma. The support line is free from anywhere in the UK.
Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis and improved access to care. As sarcoma survivors, Sarcoma Alliance can help guide you and your loved ones through the complex maze of medical providers, treatment options, and information sources available to you. The Alliance can bring you up to speed on the basics, refer you to authoritative publications and websites for further study, and help you get plugged into the various support networks already established for adults and children with sarcoma. The Alliance has created a peer-to-peer program and stories pages to allow patients and their loved ones to share their experiences with others dealing with the same diagnosis.
Patient/Caregiver Support
Founded for patients, by patients, this organization’s goals in the first two years include determining the unmet needs of the desmoid tumor patient community, providing education, launching a support group series, and developing a roadmap for navigating the healthcare and insurance systems.
CaringBridge provides the means to share medical news and updates with all loved ones at the same time, saving the time and stress of repeating information over and over. By allowing users to create free, private, and ad-free personal websites, they can quickly share updates about their own (or someone else’s) health journey. Powered by generous donors, CaringBridge websites offer a personal and private space to communicate and show support, saving time and emotional energy when health matters most.
Cleaning for a Reason Organization supports women undergoing chemo by providing FREE housecleaning – 1 timer per month for 4 months while treatment is occurring. All that’s needed is a submitted application and a doctor’s note confirming the patient is in treatment. Cleaning for a Reason then has a participating maid service in the patient’s zip code arrange for the service. The organization serves the entire US.
Patient & Caregiver Mentoring Program, a program offered by 4thangel.org, will connect you with someone who has successfully made the same journey you are about to begin – the journey toward recovery. Your specially trained volunteer and cancer survivor provides free, one-on-one, confidential support via telephone.
CanCare’s single focus is to improve the quality of life for cancer patients and their families. The organization is composed of a network of trained volunteers including cancer survivors, family members of cancer survivors, and medical professionals who provide emotional support, information, and resources to others facing cancer. Support connections are offered via telephone, email or in person, either one time or on an ongoing basis.
CANCER101’s mission is to empower, inform, and engage patients and their caregivers to take control over their diagnoses, navigate the cancer journey, and partner with their healthcare team to make informed decisions. The organization has partnered with the National Cancer Institute (NCI) to provide online planning tools to guide your journey toward better health.
Cancer Action is a regional non-profit agency in Kansas City that offers a comprehensive array of programs and services addressing the physical, social, emotional, financial, and spiritual needs of persons with cancer and their loved ones. Included are practical/direct services, financial assistance services, educational and emotional support, and wellness programs.
CancerCareers.org, powered by the American Association for Cancer Research, aims to connect cancer biomedical researchers with potential employers who seek to recruit them. The organization’s job board currently lists dozens of career opportunities throughout the US. An annual Cancer & Biomedical Research Career Fair is also offered.
CancerCare® can help patients, caregivers, and professionals. Staffed by professional oncology social workers, the organization provides free emotional and practical support through counseling, support groups, connect education workshops, publications, financial, and community programs.
The Cancer Hope Network provides free one-on-one support for adults impacted by cancer, by matching patients and their loved ones with trained cancer survivor volunteers. The organization has served patients in the United States and Canada for more than 30 years.
Cancer Support Community’s mission is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. Through its international network of affiliates, it achieves this mission by focusing on three areas: direct services, research, and advocacy. Cancer Information and Counseling Line (CICL), 800-525-3777, offers emotional support, up-to-date medical information and resource referrals through brief, professional counseling. This service is supported by the AMC Cancer fund, and is staffed Monday – Friday from 8:30 am to 4:30 pm MST. If you are unable to get through to a counselor, please leave a message. We return calls within 24 hours.
Cancer Wellness Center, serving the Northbrook, IL area, seeks to improve the emotional and physical well-being of people affected by cancer, through supportive care and education. Its offerings include lectures and workshops, wellness classes, counseling, young adult programs, and more.
Caregiver Action Network (CAN) is the nation’s leading family caregiver organization, working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. This non-profit organization provides education, peer support, and resources to family caregivers across the country, free of charge.
GetPalliativeCare.org supports patients and families looking for clear, concise information on palliative care. Tools provided include downloadable information sheets, information on accessing palliative care, and sections devoted to pediatric palliative care, information for caregivers, and palliative care for specific diseases.
Cooking with Cancer, Inc. helps those afflicted with cancer to enjoy a better quality of life through good food. Working with patients, caregivers, and healthcare workers, the organization’s goals include providing a greater understanding of the breakdown in taste, smell and digestion so recommendations for patients are most effective. Its website offers many recipes, which are researched and tested on patients undergoing chemotherapy and radiation prior to publication.
Connect thru Cancer is a nonprofit organization providing a variety of free cancer services and resources to individuals and families living with a cancer diagnosis. Our goal is to give respite to the patient in treatment while supporting their unique journey.
Fighting Chance serves the east end of Long Island, NY. It is America’s oldest and largest free, regional cancer counseling center. Its counseling formats include: patient and counselor; patient, counselor and caregiver; family counseling; and support groups. Its website also offers a robust education and resource directory.
The Gathering Place offers a wide variety of free programs and services to Northeast Ohio that address the emotional, physical, spiritual, and social needs of individuals and families coping with the impact of a cancer journey. It provides support to individuals diagnosed and their family members and friends at time of diagnosis, during treatment and after treatment has ended.
Cancer GPS provides directions for the journey to cancer patients and their close friends and family members through its interactive website, trusted experts, cancer guides, volunteer mentors, and “Intersections,” its regular educational programs. The organization serves several different regions of the U.S.
The Hope Light Foundation – sharing knowledge, promoting empowerment and building hope – seeks to increase cancer awareness, in order to enable people to recognize cancer signs and symptoms, detect cancer early, take immediate action to get help and save lives. Included in its offerings is a portal with links to a multitude of practical resources, plus educational information on many types of cancer.
Imerman Angels provides personalized connections that enable one-on-one support among cancer fighters, survivors and caregivers. Through its unique matching process, the organization partners anyone, any age, any gender, anywhere and any cancer type seeking support with someone just like them – a “Mentor Angel”. A Mentor Angel is a cancer survivor or caregiver who most importantly has faced the same type of cancer. Imerman Angels’ service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world.
Livestrong’s mission is to improve the lives of people affected by cancer, now. The organization provides direct services, we connect people and communities with the services they need, and we call for state, national and world leaders to help fight this disease. Its free, one-on-one cancer navigation services can help you take control of your diagnosis.
LivingWell Cancer Resource Center exists to provide compassionate care in the western suburban Chicago area that empowers, encourages, supports, and provides hope to cancer patients and their families. Its focus is helping cancer patients and their caregivers learn vital skills that enable them to regain control, reduce isolation, and enhance their quality of life. Whether you decide to participate in professionally led support groups, attend an educational workshop, get involved in nutrition classes, or exercise and stress reduction classes, you will learn vital skills to help you regain your sense of control, reduce feelings of isolation, and discover that you are not alone.
Part of Cancer Support Community, MyLifeLine.org empowers cancer patients and caregivers to build an online support community of family and friends to foster connection, inspiration, and healing through free, personalized websites.
OncoLink was the first cancer information website and remains one of the largest. OncoLink provides support for patients, caregivers and practitioners through education. Up-to-date information is provided free of charge.
SHARE Cancer Support creates and sustains a supportive network and community of women affected by breast and ovarian cancers. SHARE Cancer Support brings these women and their families and friends together with others who have experienced breast, ovarian, cervical, or uterine cancer, and provides participants with the opportunity to receive and exchange information, support, strength, and hope. SHARE Cancer Support’s work focuses on empowerment, education, and advocacy to bring about better health care, an improved quality of life, and a cure for these diseases. All services are free of charge.
Stronghold Ministry provides spiritual support and comfort to cancer patients, caretakers, and others in crisis. Based in Dallas, TX, the organization provides the spiritual support that is so crucial when battling cancer. From a free spiritual gift basket, to participation in your prayer support team and much more, Stronghold provides counseling, hosts support groups, speaks in home groups, Sunday school classes, youth groups and church services, and holds retreats and conferences.
SupportGroups.com is a growing online support groups community. Its goal is to bring people together around life’s challenges (including cancer and other illnesses) by providing concise, up-to-date information and a meeting place for individuals, their friends and families, and professionals who offer pathways to help.
Turning Point, The Center for Hope and Healing, is a program of The University of Kansas Hospital. Providing a gathering space where individuals and their families are welcomed and supported, Turning Point helps individuals who are ill understand, prepare for, and respond to the physical, emotional, and psychological changes brought on by serious or chronic physical illness. Its lessons in coping help families optimize not only their healing but also their relationships with each other. Turning Point also provides opportunities for people with similar illnesses to share concerns, learn skills to improve their quality of life, and gain a much-needed sense of control over their lives.
Vital Options International (VOI) is a nonprofit cancer communication, education, and advocacy organization with a special mission: generating global cancer conversations. Covering the diverse issues that comprise the central cancer experience, VOI creates a continuing and timely platform of programming that informs and inspires the entire cancer community and leads to more responsive calls to action by: bringing together cancer advocates and thought leaders for global collaboration and informative discussions; sharing the voice of the survivor; revealing cancer’s most critical issues and enduring realities from the dynamic perspectives of survivors, caregivers, advocates, and medical professionals.
weSPARK Cancer Support Center of Sherman Oaks, CA, is dedicated to enhancing the quality of life for cancer patients, their families and friends. weSPARK provides, free of charge, multiple services designed to heal the mind, body and spirit of all those whose lives have been affected by cancer. In addition to local groups and classes, weSPARK offers online resources including a blog and workshops.
Wonders and Worries teaches parents how to parent and kids how to cope during a parent’s illness. Families are welcome regardless of the stage or severity of illness, and services are free of charge. The organization offers individual and group counseling sessions for kids, parenting training and support, bereavement support and family fun events, plus more, all in the Austin, TX area.
Caregiver & Family Support
The Children’s Treehouse Foundation®’s stated mission is “Inspiring emotional support for children of parents with cancer.” The organization aims to ensure that every child whose parent is diagnosed with cancer is given the early tools and emotional support to develop positive coping strategies.
Family Caregiver Alliance is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. The services, education programs, and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving. Included are:
- Family Care Navigator, sponsored by the NCC, helps caregivers locate support services state-by-state.
- Bay Area Caregiver Resource Center is the CRC for the six-county San Francisco Bay Area, operated by FCA. Our Family Consultants work closely with families caring for ill or elderly loved ones.
Walk with Sally provides free mentoring support programs and services to children whose parents, guardians or siblings have cancer or succumbed to cancer. Its offerings also include art healing, emergency family assistance, scholarship programs, Hope for the Holidays, and much more. Serves the Los Angeles area.
Within 24 hours, the Compassion Can’t Wait (in honor of Andre Sobel) helps with urgent expenses to allow single parents to stay at their child’s bedside during catastrophic illness.
Lotsa Helping Hands makes aspects of caregiver support simple and efficient, by easily organizing meals and help for those in need. With tools such as the Help Calendar, users can post requests for support – things like meals for the family, rides to medical appointments, or just stopping by to visit. Members of the patient’s community can quickly find ways to help, and Lotsa will send reminders and help coordinate logistics automatically so nothing falls through the cracks.
The Well Spouse® Association advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. It offers peer to peer support and education for health care professionals and the general public about the special challenges and unique issues “well” spouses face every day. To achieve its mission, the Well Spouse® Association: coordinates a national network of Support Groups; facilitates a Mentor program; publishes a newsletter (Mainstay); provides resources for coping and survival skills, which includes an on-line chat forum for spousal caregivers; organizes regional respite weekends and a national conference for caregivers; provides continuing support for members whose spouses have died; advocates on behalf of spousal caregivers; seeks out new initiatives to help caregiver spouses and their families cope with the emotional and financial stresses associated with chronic illness and/or disability.
Nutrition
Physicians Committee for Responsible Medicine The Physicians Committee is dedicated to saving and improving human and animal lives through plant-based diets and ethical and effective scientific research.
The Leukemia and Lymphoma Society’s (LLS) PearlPoint Nutrition Service serves patients and caregivers of all cancer types, providing free nutrition education and consultations. Learn how to make good food choices during and after cancer treatment. Schedule a time to speak one-on-one with a registered dietitian. Discover strategies to cope with the side effects of cancer and treatment, and explore resources for support during your cancer journey.
Pain Management
American Chronic Pain Association’s mission is to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain, and to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain. Among the many tools the organization provides is its Resource Guide to Chronic Pain Treatment, an integrated guide to physical, behavioral and pharmacologic therapy.
Cancer Pain Research Consortium is an interdisciplinary, patient-centered resource for those suffering from cancer-related pain. It offers a free, downloadable guide, Managing Cancer Pain, that encompasses a wide range of topics including pain medications, the emotional effects of pain, and advocacy/financial resources.
U.S. Pain Foundation was created BY people with pain for people with pain. Their mission is to empower, educate, connect, and advocate for people living with chronic conditions that cause pain. It maintains a portal of resources for patients and loved ones, including: general/related organizations; treatment, safety and research; emotional well-being and quality of life; insurance and finances; and information for specific populations such as the disabled, children, students, veterans and caregivers.
American Association of Anesthesiologists Discover how physician anesthesiologists can help you safely and effectively manage pain from surgery, injury, labor or chronic conditions.
Expanded / Managed Access
SpringWorks Therapeutics Expanded Access Program may help in cases where a clinical trial is not an option and the patient has exhausted all available treatment options. SpringWorks may be able to provide access through our Expanded Access Program, which refers to the use of a SpringWorks investigational therapy outside of our clinical trials, when the primary purpose is to diagnose, prevent, or treat a serious condition in a patient.
Literature
Here is a list of some booklets from the National Cancer Institute’s “Support for People with Cancer” & their “Support for Caregivers” series. You can download PDF copies.
- Chemotherapy & You (68 pages)
- Coping with Advanced Cancer (64 pages)
- Eating Hints Before, During & After Cancer Treatments (76 pages)
- Cancer Pain Control (52 pages)
- Radiation Therapy & You (68 pages)
- Thinking about Complementary & Alternative Medicine (13 pages)
- When Cancer Returns (48 pages)
- When Someone You Love has Advanced Cancer (64 pages)
The National Comprehensive Cancer Network offers guidelines on making treatment decisions. Create a login to access the guidelines for Soft Tissue Sarcomas, then search for “desmoid tumors”.
Legal Services
The Cancer Legal Resource Center at Loyola Law School in Los Angeles, CA, provides free and confidential information and resources on cancer-related legal issues to people with cancer, their families, friends, employers, health care professionals, and others coping with cancer. The Center, a joint program of Loyola Law School and the Disability Rights Legal Center (formerly Western Law Center for Disability Rights), has a national toll free Telephone Assistance Line (866-THE-CLRC) where callers can receive information about relevant laws and resources for their particular situation. The Center provides training for support groups, survivors, caregivers, health care professionals, hospitals, cancer organizations, and other community groups.
Email: clrc@lls.edu
Insurance & Medicare Support
Medicare.org is a non-government healthcare resource that helps individuals, families, and those eligible for Medicare easily research, compare, buy, and enroll in the right health insurance plan at the right price – online and over the phone. It offers free, accurate comparisons for Medicare Advantage (Part C), Medicare Supplement (Medigap), and Medicare Prescription Drug Program (Part D) plans, on- and off-exchange Medical plans, as well as Short-Term Medical, Dental, and Vision insurance.
The State Health Insurance Assistance Program, or SHIP, is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Through federal grants directed to states, SHIPs provide free counseling and assistance via telephone and face-to-face interactive sessions, public education presentations and programs, and media activities.
Patient Advocate Foundation (PAF)’s Co-Pay Relief Program (CPR) provides financial assistance to financially and medically qualified patients, including those insured through federally administered health plans such as Medicare, for co-payments, co-insurance and deductibles required by a patient’s insurer for pharmaceutical treatments and/or prescription medications prescribed to treat and/or manage his/her disease. Click here to learn more about eligibility requirements and the application process.
Miscellaneous Support Programs
The Cleaning for a Reason Organization supports women undergoing chemo by providing FREE housecleaning – 1 timer per month for 4 months while treatment is occurring. All that’s needed is a submitted application and a doctor’s note confirming the patient is in treatment. Cleaning for a Reason then has a participating maid service in the patient’s zip code arrange for the service. The organization serves the entire US.
First Descents offers young adult cancer fighters and survivors (ages 18- 35) a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same.
The Patient Advocate Foundation is a national non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.
Camp Mak-A-Dream’s mission is to empower survivors and their families to live with and beyond cancer through life-changing Montana experiences where they strengthen life skills, gain resilience and develop lasting relationships. They provide a medically supervised, cost-free Montana experience, in an intimate community setting, for children, young adults and families affected by cancer. treatment centers. The camp facility is operated by Children’s Oncology Camp Foundation and includes four modern cabins, an 11,000-square-foot lodge, an art studio, health center, maintenance building, fully accessible pool, hot tub, archery range and ropes course.
The LIVESTRONG SurvivorCare program offers counseling services, help with financial, employment or insurance issues and information about treatment options and new treatments in development. LIVESTRONG SurvivorCare is for all cancer survivors, including those diagnosed, caregivers, family and friends.
Cancer Care provides counseling, support services, education and financial assistance. Professional oncology social workers provide free emotional and practical support for people with cancer, caregivers, loved ones and the bereaved.
FAP Resources
The Familial GI Cancer Registry, established in 1980 at Mount Sinai Hospital, follows many Ontario residents with FAP-related desmoids. Contact: 416-586-4800 ext 8334 or FGICR.MSH@SinaiHealth.ca. Learn more through Sinai Health’s Zane Cohen Centre.
The Sanford R. Weiss, MD, Center for Hereditary Colorectal Neoplasia (The Weiss Center) at Cleveland Clinic is made up of healthcare providers from multiple disciplines who are dedicated to the care of patients with or at risk for hereditary colorectal cancer syndromes. In 1979, Dr. David G. Jagelman established Cleveland Clinic’s Familial Polyposis Registry. His intent was to follow high-risk colorectal patients and families with a personal and/or family history of familial adenomatous polyposis. For more information about The David G. Jagelman Inherited Colorectal Cancer Registry, call 216-444-6470 or 800-223-2273 ext. 46470.
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