Chordoma Foundation

Helpful Resources

er-teaser-square-275Everyone needs help on the journey with chordoma. Here you will find publications, tools, and resources including financial assistance, housing, general cancer resources, 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.

Emotional support for patients and caregivers


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 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 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 moderated by members of the chordoma community. 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. Please send an email briefly describing your relationship with chordoma to help@chordomasupport.org, 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.

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.

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Financial Assistance


At this time, the Chordoma Foundation does not have funding available to help patients pay for treatment. One way to find out what assistance may be available to address your financial concerns is to ask for the help of a social worker or case manager at the medical center where you will be treated. Patients or caregivers can request these services through nursing or administrative staff.

Organizations like JustGiving and GoFundMe allow individuals to raise funds for the costs associated with treatment for themselves or their loved one.

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.

Co-Pay Relief Program (CPR) is a service of the Patient Advocate Foundation that provides direct financial assistance to qualified patients, assisting them with prescription drug co-payments. CPR counselors work directly with the patient as well as with the provider to obtain necessary medical, insurance, and income information in order to advance the application process.

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 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 patients navigate clinical trial options.

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.

Medicare.gov can help patients who qualify for Medicare learn what tests and treatments are covered under the program.

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 (2669).

Patient Access Network provides co-payment assistance for approved cancer medications for patients who qualify based on income.

Patient Advocate Foundation offers education, legal counseling, and referrals concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters.

Rx Assist offers a comprehensive database of patient assistance programs for people who cannot afford to pay for their medication.

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Healthcare tools and services


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.

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 (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.

Zweena Health 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.

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Housing and transportation assistance


Housing 

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 Flight provides free air transport to specialized medical facilities for evaluation, diagnosis, treatment, and rehabilitation. Patients must demonstrate financial need and have a legitimate medical need to avoid lengthy surface transportation.

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.

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.

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International care centers at U.S. hospitals


Johns Hopkins University Medical Center 

Keck Medical Center of USC

Massachusetts General Hospital 

Mayo Clinic

MD Anderson

Memorial Sloan Kettering Cancer Center 

New York University Langone Medical Center 

University of California at San Francisco Medical Center

University of Maryland Medical Center Concierge

University of Pittsburgh Medical Center

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Medical and treatment resources


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. 

“Building a global consensus approach to chordoma: a position paper from the medical and patient community” is a medical paper created by a multidisciplinary group of experts that describes consensus treatment guidelines for the appropriate treatment of chordoma. Our patient booklet, the Expert Recommendations for the Diagnosis and Treatment of Chordoma, contains the guidelines from this paper.

 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.

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.

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