- Emotional support for patients and caregivers
- Financial assistance
- Healthcare tools and services
- Housing and transportation assistance
- International patient offices
- Medical and treatment resources
Emotional support for patients and caregivers
Chordoma Survivors Support Group on Facebook
Newly diagnosed patients, chordoma survivors, and family members can connect with others in the chordoma community through a private Facebook group. This close-knit community exists to help answer questions, share personal experiences, and serve as encouragement throughout your journey with chordoma. Email approval from a group moderator is required simply to protect the privacy of the more than 1,700 members and prevent spammers from entering the private Facebook space. Please send an email briefly describing your relationship with chordoma to email@example.com, and you will receive a reply from a group administrator.
*While many members of this Facebook group are involved with the Foundation as volunteers and community advisors, the group is privately run and separate from the Foundation.
Cancer Support Community
Online and in-person cancer support groups. Offers resources for coping with the cost of care and assistance in finding financial aid.
CareGiver provides family and caregivers of cancer patients resources and support to help them through difficult times. Caregivers can share notes, recipes, stories, support and chat through this online community group.
CaringBridge.org provides free websites for cancer patients to help keep friends and family informed during their battle. Visitors can check in on the patient and caregivers and post messages of support.
Friends Health Connection
Friends’ Health Connection (FHC) offers an array of educational programs on topics including the well-being of mind, body, and spirit. They offer an award-winning worldwide support network that links individuals with the same health problems on a customized, one-to-one basis for mutual support. They also connect caregivers to one another. FHC has helped several chordoma patients find buddies based on geographic location, age, symptoms, lifestyle effects, tests and surgeries, attitude, occupation, hobbies, and interests.
Gilda’s Club provides places where men, women, and children with cancer and their families and friends join with others to build social and emotional support as a supplement to medical care. Free of charge and nonprofit, Gilda’s Clubs offer support and networking groups, lectures, workshops and social events in a nonresidential, home-like setting throughout the United States.
The Healing Exchange BRAIN TRUST
The mission of T.H.E. BRAIN TRUST is to create a healing exchange of information and support among people affected by neurological disorders including patient-survivors, families, caregivers, health professionals and researchers. Their goal is to provide and improve online communication resources, and they offer email support groups run mostly by volunteers to help patient-survivors and families affected by cancer.
National Family Caregivers Association
This group provides education and information services, support and validation for caregivers, public awareness and advocacy devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support network, educational materials, national resource referrals, and a bereavement program.
Sarcoma Alliance strives to extend and improve the lives sarcoma patients through accurate diagnosis, improved access to care, guidance, education, and support. Their website provides extensive educational materials and patient support opportunities.
This page contains information about scholarships for cancer patients, cancer survivors, children of a cancer patient or survivor, students who lost a parent to cancer, and students pursuing careers in cancer treatment. This award-winning site offers a wealth of comprehensive and informative financial aid advice and tools.
Cancer Financial Assistance Coalition
A comprehensive directory of financial assistance programs for cancer patients.
Centers for Medicare and Medicaid Services
Provides information about government-sponsored healthcare programs.
Patient Advocate Foundation’s Co-Pay Relief (CPR) Program provides direct co-payment assistance for pharmaceutical products to insured Americans who financially and medically qualify.
The Elle Foundation’s mission is to grant the wishes of children fighting chordoma for the first time, or who are experiencing a recurrence of cancer.
Eric D. Davis Sarcoma Foundation – Provide the Assist Fund
Offers financial assistance for sarcoma patients in active treatment. Provide the Assist grants may also be awarded to adults in active treatment for other rare cancers.
Working in close collaboration with a network of more than 145 hospitals and cancer centers nationwide, Family Reach provides immediate financial assistance, education, and outreach to qualifying families fighting cancer.
Lazarex Cancer Foundation
Provides assistance with the cost of clinical trial participation and helps end-stage patients navigate clinical trial options.
National Cancer Institute Financial Assistance Resource Directory
A comprehensive directory of financial assistance programs for cancer patients.
Patient Advocate Foundation
Offers education, legal counseling, and referrals concerning managed care, insurance, financial issues, job discrimination and debt crisis matters. Call toll-free at (800) 532-5274.
Patient Access Network
Co-payment assistance for approved cancer medications for patients who qualify based on income.
The Tyler Robinson Foundation
Dedicated to providing financial assistance to families with children battling cancer.
Healthcare tools and services
Access to patient resources and advocates who can provide a wide range of assistance to patients and caregivers such as managing health challenges, insurance billing, legal aid, and transportation to treatment centers.
American Association for Cancer Research
The AACR’s Survivor and Patient Advocacy Program is dedicated to bridging cancer survivors and patient advocacy with scientific communities, helping advocates and scientists work together to advance aims in cancer research.
Cure Forward is the first online matching service that connects cancer patients with precision medicine to access the targeted therapies and advanced treatments that may be best suited for their care. Their simple to use clinical trial exchange connects patients to clinical trials they might not have found otherwise.
National Association of Healthcare Advocacy Consultants
The National Association of Healthcare Advocacy Consultants (NAHAC) is a professional organization supporting the field of healthcare advocacy. Membership is open to anyone with the interest of promoting professional standards, best practices and healthcare advocacy in public policy and legislation.
PicnicHealth is an online service that collects and electronically stores patients’ medical records, lab results, doctors notes, and CT or MRI images in a secure online platform. Their team works with healthcare providers to obtain the medical records and then creates a comprehensive health timeline that can be easily shared with physicians on the patient’s behalf.
Zweena provides patients with a personal electronic health record accessible online at any time. Users have the option of uploading documents and information to their account, or the team at Zweena can collect and enter the records. Health records can be viewed on a timeline, as data in graph format, or organized into a dashboard. Family members’ accounts can be linked so that a user can easily see and track health care for all family members.
Housing and transportation assistance
Hope Lodge is a temporary housing program supported by the American Cancer Society that provides free, temporary housing facilities for cancer patients who are undergoing treatment.
Hospice Foundation of America
Provides programs and materials on hospice care, caregiving, grief, and end of life. They also provide a hospice locator service and links to other organisations and resources. Call toll-free at (800) 854-3402.
A network of private homeowners who offer rooms to patients and families visiting the Boston area for medical care. Since 1983, Hospitality Homes’ unique, home-away-from-home lodging option has provided a caring response as well as relief from emotional and financial challenges for these individuals and families. There is no cost to visiting patients.
Provides affordable, temporary housing in a home-like environment for caregivers and patients receiving medical treatment for physical illnesses at health care facilities in the Bloomington, IN area.
Joe’s House is a guide to locating temporary housing for cancer patients and their families who must travel away from home for medical treatment. Their site lists hundreds of cancer treatment centers and nearby lodging facilities.
National Association of Hospital Hospitality Houses, Inc
NAHHH lists facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies. Each facility assures that a homelike environment is provided to persons who must travel to be with a patient or to receive necessary outpatient care.
National Hospice and Palliative Care Organization
Provides information on hospice care, local hospice programs, state-specific advance directives, and locating a local health care provider. Through their program, Caring Connections, they also provide education and materials on palliative and end of life issues, as well as links to other organisations and resources. Call toll-free at (800) 658-8898.
Ronald McDonald House Charities
Ronald McDonald Houses provide a “home away from home” for families of seriously ill children receiving treatment at nearby hospitals. Ronald McDonald Houses are temporary residences near the medical facility, where family members can sleep, eat, relax, and find support from other families in similar situations.
Air Care Alliance
This is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. Their website has an extensive central listing of free air transportation services that provide transport for patients, and sometimes family members, needing to get to a treatment center.
Air Charity Network
Air Charity Network provides and coordinates access to free air transportation for patients with financial need, to help them get to treatment. They serve all 50 states through a network of volunteer pilots who use their own aircraft. They can assist patients with flights to surgery, radiation treatments, chemotherapy, and clinical trials.
Angel Flight Mid-Atlantic
Angel Flight Mid-Atlantic provides air transport to specialized medical facilities for evaluation, diagnosis, treatment and rehabilitation. Angel Flight Mid-Atlantic provides medical air transport for patients departing from: District of Columbia, Delaware, Kentucky, Maryland, Michigan, Ohio, Pennsylvania, Virginia, and West Virginia.
Corporate Angel Network
This organization arranging free flights to treatment centers, using the empty seats on corporate aircraft. Eligibility is not based on financial need and patients may travel as often as necessary.
Miracle Flights helps seriously ill children obtain proper medical care by providing flights to treatment centers.
National Patient Travel Center
This hotline provides information about all forms of charitable, long-distance medical air transportation and provides referrals to appropriate sources of help available in the national charitable medical air transportation network.
Southwest Airlines Medical Transportation Grant Program
Southwest Airlines provides complimentary, roundtrip tickets to nonprofit hospitals and medical transportation organizations. Southwest allows participating nonprofit hospitals and medical transportation nonprofit organizations the freedom to determine how to distribute the tickets to patients and/or caregivers. See a list of participating organizations on their website.
International Care Centers at U.S. Hospitals
Medical and treatment resources
American Cancer Society
ACS is a national organization that offers a variety of support services and educational materials to patients and families coping with cancer.
Bone Cancer Research Trust
BCRT is a UK-based charity that offers hope to people affected by primary bone cancer. They aim to fund research into the many different forms of primary bone cancer, and ensure that information and support are available to patients of all ages.
CancerCare is a national nonprofit organization that provides free, professional support services for anyone affected by cancer. They offer professional counseling, education, and financial support to patients who qualify.
Common Cancer Myths and Misconceptions
The National Cancer Institute has published this list of the latest science-based information about common cancer myths and misconceptions.
LIVESTRONG offers numerous educational materials, outreach programs, and support services to cancer patients and survivors. They offer free personalized support to cancer survivors, caregivers, and loved ones.
NCCN Guidelines® for Bone Cancer Treatment
The National Comprehensive Cancer Network’s guidelines for the diagnosis and treatment of chordoma. This document is useful for all patients in need of treatment. You will be asked to create a free account to access the latest version.
National Coalition for Cancer Survivorship
The NCCS is the oldest survivor-led cancer advocacy organization in the country. They focus heavily on policy issues but also provide numerous resources for cancer patients. They feature the “Cancer Survival Toolbox”, which is a free, audio program that teaches skills that can help people with cancer meet the challenges of their illness. The Toolbox includes a Basic Skills set that covers six important topics: communicating, finding information, making decisions, solving problems, negotiating and standing up for your rights.
NeedyMeds helps people who cannot afford medicine or health care costs. The information at NeedyMeds can be obtained anonymously and is free of charge. NeedyMeds is an information source similar to the Yellow Pages. It does not supply medications or financial assistance but helps people find assistance programs and other available resources.
Patient Advocate Foundation
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
Partnership for Prescription Assistance
This is a service offered by the Pharmaceutical Research and Manufacturers of America to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Their website offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free, (888) 4PPA-NOW (2669).
Prepared Patient is a resource offered by the George Washington Cancer Institute that can help patients and caregivers make informed decisions about health care. They offer resources and tips for finding good care anywhere along the cancer spectrum, from prevention to post-treatment.
RxAssist offers a comprehensive database of patient assistance programs for people who cannot afford to buy their medicine.
The Chordoma Foundation is not responsible for the content of external websites.