Desmoid tumors & Social Security Benefits. Applying and getting approved for SSD benefits with a desmoid-related disability can be tricky! This information from the Social Security Administration helps clarify how your condition is viewed by SSA, and offers guidance on maximizing the information you include in your application. Frequently asked questions about social security disability insurance (SSDI)
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 comprised 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. A cancer diagnosis turns a person’s world upside down.
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.
Care Communities offers personal connections in an impersonal world. Its volunteers provide the emotional nourishment and practical support patients need to live a full life. While offerings may vary regionally based upon volunteer staffing, services available may include help with childcare, household needs, errands, fundraising, transportation, and others.
The Cancer Hope Network provides 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 Really Sucks is a website designed to help teens with loved ones facing cancer. Designed by teenagers, it offers help addressing the questions and emotions that arise during this difficult time, through healthy and effective coping strategies. Teens can also post their stories, ask questions, and more.
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.
The Cancer Pain Research Consortium offers a free, downloadable guide, “Managing Cancer Pain: A Treatment Guide for Patients and Their Families.” Content in this 17-page publication is reviewed by a distinguished medical advisory board.
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.
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. Website users can create a free, private and ad-free personal website, to quickly share updates about their own (or someone else’s) health journey.
The Center to Advance Palliative Care is the nation’s leading resource for palliative care development and growth. It provides hospitals, health systems, hospices, payers and other health care organizations with the tools, training, technical assistance and metrics needed to support the successful implementation and integration of palliative care. Its patient/family website, 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.
The Children’s Treehouse Foundation®’s stated mission is “Inspiring emotional support for children of parents with cancer. The organization’s website is under construction at the time this information was collected, but this link has been provided as a placeholder.
Cleaning for a Reason, which serves the US and Canada, has recruited more than 1,200 maid services to donate free housecleaning to women who are undergoing treatment for cancer. Its goal is to allow patients to focus on their health and treatment by providing housekeeping assistance.
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.
Serving the metro Philadelphia area, Cuddle My Kids provides no-cost support for cancer patients and their families. Its in-home programs include no-cost visits for 1½ hours, twice a week for six weeks for families that qualify, with re-enrollment as needed. The organization also offers out-of-home programs, allowing families dealing with cancer to enjoy activities outside of the home with access to additional resources and support.
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:
- FCA CareJourney is a secure online solution for quality information, support, and resources for family caregivers.
- Family Care Navigator, sponsored by the NCC, helps caregivers locate support services state-by-state.
- National Center on Caregiving (NCC) unites research, policy, and practice to advance the development of high-quality, cost-effective programs and policies for caregivers in every 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.
Serving the east end of Long Island, NY, Fighting Chance 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 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. Serves northeast Ohio.
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 United States.
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. Visit their website to get started.
LivingWell Cancer Resource Center exists to provide compassionate care 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. The organization serves the western suburban Chicago area.
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.
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.
PearlPoint Cancer Support offers a more confident cancer journey for adults anytime, anywhere. Through its online resource, My PearlPoint, patients and caregivers can: learn about cancer and its treatment; discover information about clinical trials as a treatment option; get nutrition guidance and tips for managing side effects; find advice and support for living with and beyond cancer; use the Cancer Handbook as a guidebook through treatment and survivorship; create a profile to receive personalized resources, updates, and more.
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 or ovarian 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.
VNAA is a national trade association that supports, promotes and advocates for mission-driven providers of home health, hospice and palliative care. VNAA’s members provide cost-effective and compassionate home health and hospice care to the nation’s most vulnerable individuals, particularly the elderly and individuals with disabilities. Its strategic goals include: improving coordination and outcomes for the health of populations serviced by home-based care providers; driving quality and value improvement in the home-based care industry; and leading innovation and transformation in the home-based care industry.
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.
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.
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); hosts a website (www.wellspouse.org) with 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.
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.
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.
The Resource Center of the Alliance of State Pain Initiatives is facilitated by the University of Wisconsin. In addition to professional pain management education materials for healthcare professionals, it offers two free guides for patients and their loved ones: Cancer Pain Can Be Relieved (2nd edition), sent by US mail upon request, and Eight Facts Everyone Should Know About Cancer Pain, a downloadable pamphlet.
U.S. Pain Foundation’s 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 wellbeing and quality of life; insurance and finances; and information for specific populations such as the disabled, pediatric, students, veterans and caregivers.
The Association of Cancer Online Resources (ACOR) offers access to a desmoid tumor listserv (online mailing list) which provides support, information, and community to everyone affected by desmoid tumors. The ACOR listserv is a separate entity from the DTRF and you must subscribe and unsubscribe directly with ACOR.
Subscribe to the desmoid tumor listserv.
Unsubscribe from the desmoid tumor listserv, to remove yourself, go to this link and follow the instructions.
The information at 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.
The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care. They provide services to those affected by sarcoma, including:
A sarcoma diagnosis can be distressing and confusing. 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.
Few people know the ins and outs of cancer symptoms, diagnosis, treatment, and clinical research before they find out they have a sarcoma. The Sarcoma 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.
It can be a lonely experience finding out you have a sarcoma. Sarcoma Alliance can link you up with other people facing similar challenges. They believe that the most successful patients are educated and connected to others for social support. 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.
The Desmoidian is a Facebook community for desmoid tumor patients & caregivers
Wee Little Warriors- Juvenile Desmoid Tumor Patientsa is a Facebook community for caregivers of pediatric patients
Desmoid United UK is a Facebook community for patients & caregivers living in United Kingdom
Australian Desmoid Tumor Support Group is a Facebook community for patients & caregivers living in Australia
DESMOIDE… LAS VOCES DE LOS GUERREROS is a Facebook community for Spanish- speaking patients & caregivers
desmoid erkrankte-agressive fibromatose is a Facebook community for German- speaking patients & caregivers
F.A.P (Familial Adenomatous Polyposis) is a Facebook community for FAP patients & caregivers
Angel Flight East is available to residents from Maine to Virginia and as far west as Ohio, who need to travel anywhere within the U.S., up to a maximum of 1,000 miles. However, if you do not live in this region they work with other flight networks to make the connection.This service is a way that you can visit the experts as well as travel to NIH for the desmoid clinical trial (as the first time is not covered) at no cost to you. May provide travel to patient meeting also. For eligibility and questions, call 1-215-358-1900.
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.
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 volunteer provide this service without reimbursement or compensation. There is never a charge for the services we provide. Our primary area of geographic coverage is the entire northeast U.S. and down the eastern seaboard.
21st Century C.A.R.E is a not-for-profit foundation that provides education and financial assistance to cancer patients in Florida and in 16 other states. It provides patients financial assistance for incidental expenses related to active cancer treatments. This allows the patient to put their focus where it belongs – on beating the disease. It is one of the only organizations that provide gas, food, medical supplies, temporary lodging, etc. to cancer patients in the U.S. More information and application materials can be found here.
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. Its goal is to improve the health and economic security of 10 million older adults by 2020.
Bringing Hope Home’s founders realized there was an unmet need in the community: people need financial help and emotional support while they are undergoing cancer treatment. Its sole mission is to help pay critical household bills for local families with cancer. Individuals interested in a one-time grant must reside in the geographic areas the organization serves (regions of PA, NJ, DE and MD). More details about the nomination/application process are available here.
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.
Cancer Financial Assistance Coalition (CFAC) is a coalition of financial assistance organizations that have joined forces to help cancer patients experience better health and well-being by limiting financial challenges. To find assistance from organizations providing financial or practical help, you can search CFAC’s database here.
The CHAIN Fund provides financial assistance to patients undergoing strenuous cancer treatments, which temporarily prevent them from working. Primary services include financial assistance with mortgage, rent, utilities, prescriptions co-pays, insurance co-pays, & special food needs; and making available support services and wellness workshops.
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.
Hope Lodge offers cancer patients and their caregivers a free place to stay when their best hope for effective treatment may be in another city. It provides a nurturing, home-like environment where guests can retreat to private rooms or connect with others. Every Hope Lodge also offers a variety of resources and information about cancer and how best to fight the disease. There are more than 30 Hope Lodge locations throughout the United States and Puerto Rico.
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.
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.
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.
Partnership for Prescription Assistance helps qualifying individuals without prescription drug coverage get the medicines they need for free or nearly free. It also provides a search engine to locate free and low-cost clinics for patients. Its patient portal can be accessed here
Patient Access Network Foundation is focused on ensuring that underinsured 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.
Patient Advocate Foundation (PAF)’s Co-Pay Relieve 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.
Patient Services Incorporated (PSI) provides financial support and guidance for qualified patients with specific, rare chronic diseases. Through PSI 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 co-insurance; 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.
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. Its Disability Planner tool will help you determine eligibility and guide you through the application process.
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.
State Health Insurance Assistance Programs (SHIPs) provide free, in depth, one-on-one insurance counseling and assistance to Medicare beneficiaries, their families, friends, and caregivers. SHIPs operate in all 50 states, the District of Columbia, Guam, Puerto Rico, and the U.S. Virgin Islands, and are grant-funded projects of the federal U.S. Department of Health and Human Services (HHS), U.S. Administration for Community Living (ACL). Visit this portal to access the SHIP in your state.
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. Its financial assistance database directs individuals to organizations whose collective missions are to reduce the financial burden that a diagnosis of cancer can bring.
SOS Desmoïde in France Created in 1998, this France-based organization seeks to break patients’ isolation, collect and circulate knowledge about the disease, and stimulate research. This means, in particular, providing information and psychological support to patients; circulating data and initiating multi-disciplinary meetings of researchers and physicians; prompting new research programmes; involving patients in the designing of programmes and the collection of tissues.
SOS Desmoid in Germany Building a self-help network for patients with Desmoid Aggressive fibromatosis. Provides one with the opportunity to network with stakeholders and interested parties. Aufbau einer Selbsthilfe für Patientinnen und Patienten mit Aggressiver Fibromatose/ Desmoid.
Sarcoma NL, the Dutch Sarcoma Foundation, focuses on Dutch speaking (ex) patients with a sarcoma or other rare tumors like Desmoïd tumor that also need to be treated by a specialist sarcoma multidisciplinary team. Therefore we focus on The Netherlands and the Flemish (Dutch) speaking part of Belgium, as well as far beyond these borders.
Desmoid United UK A very friendly group of patients and carers who share personal experiences of consultants and information we have learned along the way. They meet up in Bath every 3 months to check up on each other and to gather any new information. They suggest certain benefits that desmoid patients may be able to claim. Contact them at DesmoidUnitedUK@hotmail.com.
Childhood Soft Tissue Sarcoma Treatment (PDQ®): Health Professional Version This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about the treatment of childhood soft tissue sarcoma. It is intended as a resource to inform and assist clinicians who care for cancer patients. It does not provide formal guidelines or recommendations for making health care decisions. This summary is reviewed regularly and updated as necessary by the PDQ Pediatric Treatment Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH).
Abdominal Wall Reconstruction has become a frequently used term to describe hernia repairs that try to recreate the abdominal wall and restore function and structure. Although there has been no true definition of a functional abdominal wall, many surgeons believe this involves the closure of the fascia at the midline often with reinforcement using mesh prosthetics. The integrity of the abdominal wall is vital as it serves to protect the internal organs, supports the spine and helps maintain an upright posture. Several tumors can occur on the abdominal wall, and the most common are desmoid tumors. These lesions even though histologically benign, often are very locally invasive. Treatment of desmoids often requires full thickness abdominal wall excision. Despite this, local recurrence rates are nearly 40% to 50%. Most of these recurrences occur within the first 24 months after surgery. In some cases, adjuvant radiation therapy is recommended especially when the margins are not clear. Management of malignant lesions of the abdominal wall requires aggressive resection of the subcutaneous tissues and skin, as well as any involved muscle. Sarcomas are the most common tumors of the abdominal wall and require aggressive resection, followed by radiotherapy. There may also be some intraabdominal wall tumors either via hematogenous or contiguous spread that require resection. Reconstruction of the abdominal wall in these cases is usually directed by the extent of resection and the possibility of further surgical intervention.
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)
- 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 here.
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 trainings for support groups, survivors, caregivers, health care professionals, hospitals, cancer organizations, and other community groups. Email: email@example.com; Brochure / Disability Rights
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.
If you know any woman currently undergoing Chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning – 1 time per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service. This Cleaning for a Reason Organization serves the entire USA and currently has 547 partners to help these women.
Within 24 hours, the Andre Sobel River of Life Foundation helps with urgent expenses to allow single parents to stay at their child’s bedside during catastrophic illness.
CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. 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. Learn more about creating your own website today.
The Patient Advocate Foundation mission is to provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses. They assist patients with Medical Debt Crisis, Insurance Access Issues and Job Retention Issues.
Camp Mak-A-Dream’s mission is to 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.
Caring Voice Coalition is dedicated to improving the lives of patients with chronic illnesses. Our organization continues to accomplish its mission by offering outreach services that provide financial, emotional and educational support.
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.
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.
Alex’s Lemonade Stand Foundation for Childhood Cancer… www.alexslemonade.org, 866-333-1213
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.
American Childhood Cancer Organization… www.acco.org, 855-858-2226
Believe in Tomorrow Children’s Foundation offers hospital housing for children- and their families- being treated at Johns Hopkins. The 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.
The Familial Adenomatous Polyposis Foundation is a nonprofit organization serving the hereditary colon cancer community by connecting patients and their loved ones to educational and social resources, providing financial assistance for screening, treatment, counseling, and family planning, and by promoting requisite research and health care initiatives.
Canadian FAP registry- This Familial GI Cancer Registry, established in 1980, follows many Canadian families for FAP-related desmoids. Contact: Mount Sinai Hospital, Terri Burk, Tel. 416 586 4800 ext 8334, Email: firstname.lastname@example.org, Visit www.mtsinai.on.ca/familialgicancer FAP articles- Genetic Health enables you to learn the latest about genetics and your health, Assess your inherited risk on-line and act to take control of your health. Access FAP articles here.
The Cancer Federation provides information, donations, education, educational materials and support groups for cancer patients, to help their families and friends.. The Federation is a not-for-profit organization that provides information, counseling, educational materials and meetings for the cancer patients, their families and friends. The federation has provided help for thousands of people over the last 25 years.
Hereditary Colorectal Cancer Takes Guts (www.hcctakesguts.org) arms patients within the hereditary colon cancer community with eduational and social resources and empowers them to confidently advocate for their health care.
The mission of the David G. Jagelman Inherited Colorectal Cancer Registries is to prevent death from colorectal cancer by providing the best care to patients and families, to promote knowledge of the risk and implications of a family history of colorectal cancer and to conduct important research in areas of concern. If you or a family member have been diagnosed with Familial Adenomatous Polyposis (FAP), MYH-Associated Polyposis (MAP), Peutz-Jeghers syndrome (PJS), Juvenile polyposis (JP) Sessile Serrated Polyposis (SSP), or Hereditary Non-Polyposis Colon Cancer (HNPCC) and would like more information on the Jagelman Registries please call 216-444-6470 and ask to speak with a registry coordinator.