Below, you’ll find links to information and organizations to help you navigate your journey with sarcoma. See practical help such as housing and travel subsidies as well as links to other cancer organizations.
Advance Care Planning
The Conversation Project Advance Care Planning
Advance care planning is a way to state what an individual’s life values, personal goals, and medical preferences are so that they are clear to loved ones and healthcare providers. Any person—at any age or stage of health—can create a care plan and change that plan at any time. When you go into the hospital for any reason, you will be asked who your medical decision-maker will be. The role of your decision-maker is not to make decisions for you, but for that person to speak on your behalf if you are unable to speak for yourself. Advance care planning is an important tool for your loved ones to help guide them in case of a medical emergency and will also allow them to support you with any medical decision-making in the future.
The Sarcoma Alliance understands that the global COVID-19 pandemic adds difficulty to the existing complexities of a sarcoma diagnosis. Below you’ll find some nation-wide resources to help you get the continued support needed during the pandemic.
- Cancer Care has a list of organizations that provide financial assistance for people facing cancer.
- Search the Cancer Financial Assistance Coalition’s database for organizations that provide specific financial and practical assistance for cancer patients and their loved ones.
- Debt.org lists organizations that provide financial support for cancer treatment and medical bills, housing, and transportation assistance.
- Family Reach provides a COVID-19 emergency relief fund for cancer patients as well as a fast-track financial assistance program.
- Health Well Foundation has a COVID-19 fund for assistance with costs associated with delivered food, medication, diagnostics, transportaiton and telehealth as a result of COVID-19 risk or incidence.
- The Patient Advocate Foundation provides navigation assistance for programs and services to relieve financial burdens for patient in addition to a COVID-19 Co-Pay Relief Fund and a COVID-19 Care Recovery Fund.
- Patient Access Network (PAN) Foundation has a COVID-19 Financial Support Fund. They are currently not accepting applications for new patients but you can call 1-866-316-9263 from 9am to 7pm Eastern Time to be put on their waitlist.
- The Sam Fund provides financial assistance grants for young adult cancer survivors (ages 21-39).
- Find a food bank in your region on Feeding America’s site.
- Search Why Hunger’s map for a food pantry near you.
In September 2020, the CDC issued a federal eviction moratorium that temporarily bans evictions and protects renters who may struggle to pay their rent during the global COVID-19 pandemic. Information on this is available on NLIHC’s and NLHP’s Eviction Moratorium Overview and FAQ Sheet in English and Spanish.
While the government’s federal eviction moratorium is no longer in effect, some cities and states have protections in place for renters who have been unable to pay rent due to hardships caused by the pandemic. Contact your local and state housing agencies to see if this is available in your area. You can also learn more about fighting evictions from the Alliance for Housing Justice.
- The National Housing Law Project has a COVID-19 tab on their website which explains bans on evictions and includes links to lots of resources including declarations in over 20 languages and fact sheets.
- Find housing justice resources in your community by searching on Justice Shelter’s map.
- The National Low Income Housing Coalition has a map and list of state and local emergency rental relief assistance funds.
- Regional Housing Legal Services has an Eviction Moratorium map that outlines how the CDC’s Eviction Moratorium impacts your state.
- The American Bar Association offers resources for finding legal aid and pro bono lawyers in your area. They also have an online pro bono program that you can use to get free answers to your legal questions.
- Law Help.org offers low-cost and free legal help.
- Use the Legal Services Corporation map to search for legal aid services near you.
- USA.gov lists organizations that help people with finding free and low-cost legal aid as well as resources for people in specific groups or situations.
Amputation & Disability Resources
Americans with Disabilities Act – Questions & Answers
Ampower – Peer support community for amputees. They also have a virtual support group on Facebook.
Social Security – Disability Programs
Drug Access and Information
ACS Cancer Reference Info – Click on Cancer Drug Guide
American Cancer Society – List of Information about Cancer Drugs
American Society of Health-System Pharmacists
The Medicine Program – Accessing Free Medication
Needy Meds – Drug Assistance
Partnership for Prescriptions – Several hundred drug assistance programs stand ready to offer free or low-cost drugs to patients in need.
Toll Free Telephone: 1-888-477-2669
Rx List – The Internet Drug Index
Financial Assistance List – See our list of many organizations offering financial assistance.
Second Opinion Grants – Apply for the Sarcoma Alliance’s special grant program that reimburses costs for getting a second opinion.
Find a food bank in your region on Feeding America’s site.
Search Why Hunger’s map for a food pantry near you.
A Shelter for Cancer Families (ASCF) – Temporary, short-term housing while seeking medical treatment in Houston, Texas, USA.
Cedars-Sinai “Where to Stay” Page Lodging near Cedars-Sinai in Los Angeles, California, USA. Select hotels may offer special rates for patients and their families.
Dan’s House of Hope – Housing specifically for adolescents and young adults (AYA) in Houston.
Hope Lodge – American Cancer Society’s Hope Lodge program provides FREE lodging to cancer patients in select cities around the U.S.
Hospitality Apartments – Temporary, free housing in Houston, Texas, USA.
Joe’s House – Free or reduced housing nationwide
National Association of Hospital Hospitality Houses, Inc.
Ronald McDonald House – Provides inexpensive housing for families of ill children in many locations
American Bar Association – offers resources for finding legal aid and pro bono lawyers in your area. They also have an online pro bono program that you can use to get free answers to your legal questions.
Disability Rights Legal Center – Services for health and disability insurance, employment, estate planning, and finances
Law Help.org – offers low-cost and free legal help.
Legal Services Corporation – map to search for legal aid services near you.
USA.gov – lists organizations that help people with finding free and low-cost legal aid as well as resources for people in specific groups or situations.
Managing Mental Health After a Cancer Diagnosis – A resource page from Georgetown University that discusses how cancer affects mental health, how to identify signs of mental health issues, and ways to manage emotional health during any stage of treatment. The guide also shares additional resources and helpful tools.
Sarcoma Alliance Wellness Blog – Contains short articles on different topics related to cancer and mental health.
Get Palliative Care – Palliative care teams are medical specialists in symptom management such as pain or other troublesome symptoms. They provide an extra layer of support to people living with a serious illness. It is appropriate at any age and any stage of a serious illness and can be provided along with curative treatment.
Medscape Oncology Pain Learning Center
National Comprehensive Cancer Network Pain Guidelines – These guidelines for physicians require registration and are free to everyone.
National Comprehensive Cancer Network Palliative Care Guidelines – The goal of palliative care is to anticipate, prevent and reduce suffering; promote adaptive coping, and support the best quality of life for patients/families/caregivers regardless of the stage of the disease or the need for other therapies.
Air Charity Network coordinates free air transportation for people in need – 877-858-7788
Airlines of the Web Medical Air Services – (AOW)
Angel Airlines for Cancer Patients – The mission and purpose of Angel Airlines For Cancer Patients’ is to ensure that no cancer patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance commercial airline transportation.
Angel Flight East (AFE)- Free air transportation to children and adults seeking medical treatment far from home. Volunteer pilots use their own aircraft to bring patients to appointments in the Northeastern region of the U.S. For flights outside of this region, AFE can put you in contact with other volunteer pilot organizations.
Corporate Angel Network – Free Airline Flights for Cancer Patients
Mercy Medical Angels – Patient Travel Referral Program
Patient Airlift Services (PALS) – PALS is a 501(c)(3) organization that was founded in 2010 and has since flown over 23,000 flights for individuals and families in need. They have over 700 volunteer pilots across 43 states who, along with corporate and commercial partners, enable the organization to provide comprehensive door-to-door transportation assistance including both air and ground transportation. Services are completely free of charge and there is no limit to the number of times a person or family can fly with them. To learn more or request a flight, please visit their website.
Sarcoma Oma Foundation – provides travel-related financial assistance patients seeking sarcoma-related medical care.
Southwest Airlines – Medical Transportation Grant Program (MTGP) provides roundtrip tickets to select nonprofit hospitals and healthcare organizations. For a full list of participating hospitals and organizations, please visit their website. You may also contact the Southwest Airlines directly at:
Department of Civic and Charitable Contributions
P.O. Box 33611
Dallas, TX 75235
Links for Additional Organizations
Bone Cancer Organizations
Bone Marrow & Cancer Foundation – For more information about the foundation and its programs, please visit their website or view their Mission and Programs Summary.
The Center for Orthopedic Oncology and Musculoskeletal Research
Limb Preservation Foundation – Denver, CO
American Indian Cancer Foundation
American Society of Clinical Oncology – Sarcoma specific information
Asian American Cancer Support Network
Asian and Pacific Islander National Cancer Survivors Network (APINCSN)
Cancer Care – Counseling, Education and Comprehensive Resource Guide
CancerNet: PDQ – NCI’s Comprehensive Cancer Database
Cancer Support Community – Free Professional Support Services
Cancer Supportive Care Program – Comprehensive Coping Guide
Cancer Survival Toolbox – Free Audio Program Teaching Self Advocacy Skills
The Doctors Doctor – Interpret Pathology Reports (for a fee)
Facing Our Risk of Cancer Empowered (FORCE)
Healthline – Cancer Channel
Imerman Angels Resource Packets – Contains links to resources for children and adults including stress-relieving activities, resources for cancer and the holidays, webinars, and more!
Josh Powell Foundation – The foundation’s mission is achieved by empowering the minds of newly diagnosed sarcoma patients, providing them with inspiration, encouragement, and motivation to keep going beginning on their first day of treatment.
Look Good…Feel Better – Free Service for Women and Teens with Cancer
National Cancer Institute –
National Coalition for Cancer Survivorship – Advocacy
National Comprehensive Cancer Network – Website specifically for patients
National Institute of Health – Chemotherapy and You
Native American Cancer Initiatives, Inc. (NACI)
Nueva Vida – An organization that supports Latinas with cancer and their families in the Washington D.C. and Baltimore areas
Oncolink – Cancer Information for Professionals and Lay Persons
Patient Power – A website devoted to providing patients and care partners dealing with cancer and other serious and chronic conditions with detailed information and patient stories.
People Living With Cancer – A patient website from ASCO with doctor-approved patient information
SAGE – Advocacy and services for LGBTQI+ elders
Steve Dunn’s Cancer Guide – Patient Perspective
Vital Options International – Telesupport Cancer Network and Radio Program
Sarcoma Information from Cancer Organizations
British Columbia Cancer Agency – Bone and Connective Tissue Sarcomas
The Doctor’s Doctor – Look up specific soft tissue sarcoma diagnoses here
Management of Soft Tissue Sarcomas: An Overview and Update
Excellent article about soft tissue sarcoma in the journal The Lancet Oncology. There is a fee for the complete article.
MDAnderson Cancer Center – Sarcoma Practice Guidelines
The National Cancer Institute’s Soft Tissue Sarcoma Home Page
National Cancer Institute Adult Soft Tissue Treatment PDQ (Physician Data Query)
Please see our list of international sarcoma groups and organizations on our Sarcoma Centers page.
Connective Tissue Oncology Society (CTOS)
CureSearch (Children’s Oncology Group / National Childhood Cancer Foundation)
The Desmoid Tumor Research Foundation
EHE Foundation – Epithelioid Hemangioendothelioma
Karen Wyckoff Rein Sarcoma Fund
Kristen Ann Carr Fund Sarcoma Forum
Leiomyosarcoma Support and Direct Research Foundation
The Liddy Shriver Sarcoma Initiative – website is no longer updated but contains lots of rich sarcoma-related information.
The Life Raft Group – GIST
National Leiomyosarcoma Foundation (LMF)
The Paula Takacs Foundation for Sarcoma Research
Raven A. Fecunda’s Sunflowers of Destiny Foundation
The Sarcoma Foundation of America
Find a Sarcoma Expert
We offer a list of sarcoma centers around the world to help you find sarcoma experts in your area.