Helpful Resources
Everyone needs help on the journey with chordoma. Here you will find publications, tools, and resources for financial assistance, housing, general cancer support, more.
If you are aware of a resource that would be helpful to patients and their caregivers that is not listed on this page, please contact support@chordoma.org.
Cancer Support Community (CSC) is the largest professionally led nonprofit network of cancer support worldwide. CSC has an international network of affiliates that offer social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone.
CareGiver provides caregivers resources and support to help them through difficult times. Caregivers can share notes, recipes, stories, and support tips.
Caregivers Action Network is devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support forum, and educational materials.
CaringBridge offers free websites for cancer patients to help them keep friends and family informed during their journey. A CaringBridge site can help you quickly share updates about your own or someone else’s health journey in a private and protected setting.
Chordoma Connections is a private space where individuals affected by chordoma can come together to exchange information, share experiences, and support one another.
Chordoma Foundation Peer Connect Program is a free, confidential peer-support program that connects anyone touched by chordoma with another person whose experiences with chordoma are similar. Trained Peer Guides are available to newly diagnosed patients, patients in active treatment, survivors, caregivers, family members, and/or friends.
Chordoma Support and Survivors Group on Facebook
Newly diagnosed patients, chordoma survivors, and family members can connect with others in a chordoma community through a private Facebook group which is moderated by two seasoned chordoma survivors. This close-knit community exists to help answer questions, share personal experiences, offer guidance, and serve as encouragement throughout your journey with chordoma. There are over 2,400 members in 83 countries in this private/closed forum and when you join, you’ll be asked to answer simple questions that only group moderators can see. Note posts within the group are visible only to group members.
*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.
Gilda’s Clubs are community organizations helping people living with cancer and their families join with others to build social and emotional support. Free of charge and nonprofit, Gilda’s Clubs offer support and networking groups, lectures, workshops, and social events in non-residential, home-like settings throughout the United States. To find a Gilda’s Club near you, simply search Gilda’s Club and the name of the city nearest to you.
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.
Sarcoma Alliance strives to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, guidance, education, and support. Their website provides extensive educational materials and patient support opportunities, including a Peer-to-Peer Network.
Theravive is a network of licensed counselors, therapists, and psychologists who provide mental health services to patients and caregivers throughout the U.S. and Canada. Search their directory to find a therapist near you, or one who will provide services remotely by phone or video.
The B+ Foundation is one of the largest providers of financial assistance to families of kids with cancer in the United States. They aim to assist families with expenses directly attributable to the child’s diagnosis.
Cancer Scholarships lists educational scholarships to colleges and universities that are available to 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.
Cancer Financial Assistance Coalition is a comprehensive directory of financial assistance programs for cancer patients.
The Drew Barker-Wright Charity is a UK charity focusing on pediatric chordoma. Set up in memory of Drew, who passed away from chordoma at the age of 4 years old, this organization offers information and financial support to the families of newly diagnosed children aged 0 to 16 living in the UK.
ELLE Foundation is a wish-granting organization founded by Lauren “Elle” Elizabeth Richmond, who passed away at the age of 15 after battling chordoma. The foundation serves pediatric patients ages 20 and younger.
Eric D. Davis Sarcoma Foundation (EDDF) offers financial assistance for sarcoma patients in active treatment through their Provide the Assist Fund. EDDF grants can help cover transportation, lodging, meals, and childcare. They are issued twice per year – in the spring and fall.
Family Reach works in close collaboration with a network of more than 300 hospitals and cancer centers nationwide, Family Reach provides immediate financial assistance, education, and outreach to qualifying families in the United States fighting cancer.
JustGiving and GoFundMe allow individuals to raise funds for the costs associated with treatment for themselves or their loved one.
Lazarex Cancer Foundation provides financial assistance to make it possible for patients to participate in clinical trials taking place in the United States. For international patients, assistance is only available for travel within the United States.
Make-A-Wish America grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. Children between the ages of 2½ and 18 at the time of referral are potentially eligible for a wish.
National Cancer Institute Financial Assistance Resource Directory is a comprehensive directory of financial assistance programs for cancer patients.
Partnership for Prescription Assistance 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 (888) 4PPA-NOW (477-2669).
Patient Access Network provides co-payment assistance for approved cancer medications for patients who qualify based on income.
Rx Assist offers a comprehensive database of patient assistance programs for people who cannot afford to pay for their medication.
Sean Silver Memorial Scholarship is a $2,500 grant available to degree-seeking Chicago area cancer patients between the ages of 15 and 30. The grant is made possible by Sean Silver, who fought hard to earn his diploma in the midst of multiple surgeries and radiation for his chordoma.
Vital Options International’s Selma Schimmel Vital Grant is a grant program to assist patients facing a significant financial hardship due to the diagnosis of a chronic condition such as cancer, Parkinson’s or Huntington’s Disease.
American Cancer Society offers guidance on appealing a claim that is denied by an insurer.
Cancer Legal Resource Center (CLRC) provides free cancer-related legal information to people worldwide. CLRC does not provide legal advice or financial assistance, and, generally, does not provide direct legal representation.
Eligibility.com is a free service that can help people understand their eligibility for benefit programs like Medicare, Medicaid, and Social Security.
LIVESTRONG has a helpful guide to appealing insurance claim denials and also has Patient Navigators available to assist with insurance appeals and denials.
Medicare.gov can help those who qualify for Medicare learn what tests and treatments are covered under the program.
Patient Advocate Foundation offers education, legal counseling, and referrals concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters.
AdvoConnection helps patients find private, independent, professional patient advocates who can assist patients and caregivers manage challenges including insurance billing, legal aid, case and care management, medical billing and claims assistance, home health, and palliative care consulting.
Cancer and Careers empowers and educates people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events.
Ciitizen, a company that makes requesting your medical records as easy, secure, and useful as it should be. On your behalf, Ciitizen handles the medical records request process and gathers all your records on their platform. They can request records from anywhere you’ve received care, including hospitals, private clinics, or imaging and diagnostic labs. Their goal is to make it easier for you to have a full picture of your medical history and, if you choose, share it with others.
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.
Picnic Health 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.
Housing
American Cancer Society Hotel Partners Program works with Extended Stay hotels to offer free or reduced rate lodging to cancer patients and their families. The program is open to cancer patients of all ages, including pediatric patients accompanied by a parent, and patients traveling with children.
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. There are currently more than 30 locations throughout the United States, and more are in development.
Hospice Foundation of America provides a hospice locator service for facilities in the United States.
Hospitality Homes is 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.
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. 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.
Ronald McDonald House Charities 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.
Transportation
Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilots offer free flights to patients traveling long distances for treatment. 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 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 Airlines for Cancer Patients facilitates no-cost commercial airline tickets for cancer patients and their families in financial need. They assist patients traveling to medical institutions within the United States for consultations, diagnosis, and treatments.
Angel Wheels helps patients cover the costs of ground transportation for trips that do not exceed 300 miles.
Corporate Angel Network arranges 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 provides financial assistance for medical flights so that seriously ill children may receive life-altering, life-saving medical care and second opinions from experts and specialists throughout the United States.
More Memories More Moments Foundation has a grant program that provides financial support for cancer patients and their caregivers to access treatment innovations, including travel to participate in clinical trials. Preference is given to residents of Clayton County, Iowa with secondary preference to residents of the State of Iowa but any resident of the United States may apply. The clinical trial treatment must be in the contiguous United States. At this time, More Memories More Moments does not support international travel at this time.
National Patient Travel Center is a hotline that 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 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.
Johns Hopkins University Medical Center
Massachusetts General Hospital
Memorial Sloan Kettering Cancer Center
New York University Langone Medical Center
University of California at San Francisco Medical Center
“Building a global consensus approach to chordoma: a position paper from the medical and patient community” contains consensus guidelines for the appropriate diagnosis and treatment of primary chordoma. Our patient booklet, Expert Recommendations for the Diagnosis and Treatment of Chordoma, includes the guidelines from this paper.
“Best practices for the management of local-regional recurrent chordoma: a position paper by the Chordoma Global Consensus Group” contains consensus guidelines for the appropriate treatment of recurrent chordoma. Our patient booklet, Expert Recommendations for the Treatment of Recurrent Chordoma, includes the guidelines from this paper.
American Cancer Society 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 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.
Cancer Care 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.
The Conversation Project is an initiative that aims to have every person’s wishes for end-of-life care expressed and respected. They offer tools, guidance, and resources to begin talking with loved ones about your and their wishes.
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.
The National Comprehensive Cancer Network’s Guidelines® for Bone Cancer Treatment contains 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 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 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.
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.
If you are aware of a resource that would be helpful to patients and their caregivers that is not listed on this page, or have any questions about the programs and resources listed, please contact support@chordoma.org.
The Chordoma Foundation is not responsible for the content of external websites.