Sarcoma Support Resources
Links to supportive resources are located throughout our website. Those that are especially helpful are featured on the sarcoma subtype pages and in the Learn about Sarcoma articles. The following additional resources may be helpful for those who are dealing with sarcoma.
Online Support Groups
- Support Groups for Sarcoma Subtypes: Choose your subtype in the "Sarcoma Subtypes" pull-down menu and look in the "Stories and Support" section to find support groups for people with a specific diagnosis.
- Live Online Sarcoma Support Group: Held on the 3rd Thursday of each month from Noon - 1pm, this group is facilitated by Linda, a social worker at Memorial Sloan-Kettering Cancer Center. To register, e-mail [email protected]
- SmartPatients Sarcoma Community: The ACOR lists, which were the first sarcoma support communities online, have now moved to SmartPatients.com. The Smart Patients Sarcoma Community is an online discussion forum where members share advice and support with other patients and caregivers.
- Sarcoma Alliance Discussion Board: The Sarcoma Alliance maintains a support forum for patients, caregivers and friends.
- Planet Cancer Sarcomas Group: Planet Cancer is a community of young adults with cancer—the ages between "pediatric" and "geriatric."
- Sarcoma-UK E-mail Support List: The sarcoma email list is provided by Sarcoma UK and is primarily aimed at UK residents, whether being treated in the NHS or privately. There is also a list for carers that allow carers and family of sarcoma patients to share experience and ideas in a supportive and private place.
California Support Groups
- In Los Angeles: Cedars-Sinai's Sarcoma Support Group
Meets the third Wednesday of each month from 12:00 to 1:30pm.
- In Redando Beach: Sarcoma Alliance Networking Group
Meets the 2nd Saturday at 11:00am at the Wellness Community, South Bay Cities.
Georgia Support Groups
- Atlanta: Emory Winship Cancer Institute's Sarcoma Support Group
Meets the 3rd Wednesday of the month from 6:30 to 8:00pm
Massachusetts Support Groups
- Boston: Dana Farber Cancer Institute's Sarcoma Support Group
Support group for sarcoma patients and family members. The group meets in Smith 330 from 12:30-1:30pm on the first Monday of each month (with the exception of September 2013, when they will meet on the second Monday). Parking is validated in the Dana-Farber Yawkey Garage. Registration is required. Call Larissa Hewitt, LICSW at 617-582-7548 to register or for more information.
Ohio Support Groups
- Columbus: The James Cancer Hospital's Sarcoma Support Group
Meets the last Tuesday of the month from 6:00 to 7:30pm
South Carolina Support Groups
- Greenville: Sarcoma Support Group
Meets the 4th Monday of each month at 7:00pm
Canada Support Groups
- Toronto: Mount Sinai Hospital Sarcoma Patient Support
Meets the 2nd and 4th Tuesday of the month from 1:00 to 2:00pm
United Kingdom Support Groups
- There is a list of local support groups maintained by Sarcoma UK here.
Hand in Hand: For Sarcoma Second Opinions
The Suzanne R. Leider Memorial Assistance Fund was created to support sarcoma patients in finding the treatment they need. Hand in Hand offers financial assistance for second opinion consultations by reimbursing expenses related to travel, phone bills, costs of the evaluation, and related expenses. Although modest, Hand in Hand enables us to touch as many patient lives as possible. Grants from the fund are awarded each quarter. Each applicant is eligible for up to $500 in grants per year.
Sarcoma Patient Housing Program in Houston
The Amschwand Sarcoma Cancer Foundation has recently expanded its popular corporate apartment program for sarcoma cancer patients. ASCF's corporate apartments in Houston, Texas, are offered to sarcoma patients and/or their families free of charge. These apartments allow sarcoma patients from around the world to receive treatment at MD Anderson Cancer Center.
A database of organizations that provide cancer patients and their caregivers with emotional, practical, and financial support services. The database can be searched by type of assistance provided, cancer type, and keyword.
CCS provides funds for medical care, accommodations, and travel expenses to make it possible for families in need to obtain the necessary care for their children and to be with them when out of town hospitalization and treatment is required. Additionally CCS provides gifts to children with pediatric cancer. While children are naturally resilient, we believe that the occasional gift provides a positive state of mind and creates the optimal environment for the body to heal. Recipients of gifts are recommended to us via hospital social workers who keep an eye out for children who are in need of this kindness. Use their contact form for financial assistance.
A national non-profit organization whose mission is to provide free professional help to people with all types of cancer through counseling, education, information and referral and direct financial assistance. Individual counseling and support groups offered online, by telephone, or at on site locations. Limited financial assistance is available for such items as transportation, child care, home care, and pain medication.
This is a service offered by the Pharmaceutical Research and Manufacturers of America (PhRMA, see entry below). PhRMA leading research-based pharmaceutical and biotechnology companies in the United States. The site contains a directory of all the member companies that conduct these programs and the medicines that are covered. It also describes how to request assistance. Programs supported by PhRMA members helped 5.5 million underinsured or uninsured patients to obtain more than 14 million prescriptions in 2002. This online service is free and completely confidential.
Paying for Clinical Trials from the National Cancer Institute
As you think about taking part in a clinical trial, you will face the issue of how to cover the costs of care. Even if you have health insurance, your plan may not cover all of the costs related to receiving treatment in a clinical trial...
A program of the Cancer Survivors' Fund, this fund reduces financial hardship on families by providing young adults with prosthetic limbs.
The Stephen T. Marchello Scholarship Foundation is a nonprofit organization which gives post-secondary scholarships to current year high school graduates who are survivors of childhood cancers in the states of Colorado, Montana, California, and Arizona. The site also contains a list of cancer survivor scholarship funds with no restrictions as to residency of applicant.n
Additional Financial Assistance
- Clayton Dabney Foundation for Kids with Cancer
- Cure Our Children Foundation Financial Assistance Page
- Drug Assistance Programs from Pharmaceutical Companies
- First Hand Foundation
- Heroes for Children
- Hill-Burton Free & Reduced Cost Health Care
- Insure Kids Now
- Katie Beckett Program
- Kelly Anne Dolan Memorial Fund
- Medicaid: State by State Descriptions & Plans
- National Children's Cancer Society
- Novartis Patient Assistance Program
- Resources for Young Adult Survivors
- The SamFund: Grants for Young Adult Survivors to Move Forward
- Take My Hand Project
- Taking Charge of Money Matters
- Amschwand Foundation Housing Program (Houston, TX)
- Believe in Tomorrow Housing (Baltimore, MD)
- Dan's House of Hope (Houston, TX)
- Hope Lodge (A Home Away from Home)
- Joe's House - A Guide for Cancer Patients
- Miracle House (New York City)
- National Association of Hospital Hospitality Houses
- Ronald McDonald House Charities
- Brian Morden Memorial Scholarship
- Cancer Survivors' Fund
- Cure Our Children Foundation Scholarship Information
- FastWeb (Matching Students to Scholarships)
- Patient Advocate Foundation
- Ped-Onc Resource Center
- Stephen T. Marchello Scholarship Foundation
- The Kyle Lee Foundation
- The SAM Fund Grants for Youg Adult Survivors
- Ulman Cancer Fund for Young Adults
- Air Care Alliance
- Angel Flight America
- Corporate Angel Network
- Lifeline Pilots
- Mercy Medical Airlift
- Miles for Kids in Need (AA)
- National Patient Air Transport Helpline
- Patient AirLift Services (East Coast)
Dream and Wish Foundations
- Chef David's Kids
- Believe in Tomorrow Children's Foundation
- Dial A Dream (UK)
- Dream Factory
- Dream Foundation
- Kid's Wish Network
- Make A Wish
- Memories of Love
- Ped-Onc Resource Center
- Sunshine Foundation
- Twilight Wish Foundation (for seniors)
- United Special Sportsman Alliance
- Willow Foundation (UK, young adults)
Recommended Resources for Children
Caring Cabin for families of children and adolescents with cancer
Caring Cabin was created to provide families a serene escape from the sterile environment and painful procedures of hospitals. The beautiful custom-designed cabin is nestled among 24 acres of peaceful wooded land in Pacific City, Oregon. The cabin features its own private lake and is just minutes from the beach. The Caring Cabin is fully equipped to meet children’s medical needs and is available at no cost to families.
Camp Friendship for children with cancer
Camp Friendship is a special, week-long residential camp for children with cancer, where kids with cancer can just be kids. Other programs are offered for teens, siblings, and parents.
The website of a community-anchored, multi-disciplinary consortium of “Rhabdo Activists.”
Kids Konnected for children of parents with cancer
Kids Konnected was developed on the premise that when a parent gets cancer, the entire family is affected and the needs of the children must be addressed. Their programs started in California and soon spread nationwide. The mission of Kids Konnected is to provide friendship, understanding, education and support for kids and teens who have a parent with cancer or have lost a parent with cancer.
National Children’s Cancer Society for families of children with cancer
The National Children’s Cancer Society offers a family support program, transportation assistance fund and emergency assistance fund to support families throughout the United States during their child's cancer treatment. They also provide an online community and a survivorship program.
Founders Susan and Jim Ralston discovered the benefits of proton therapy in 2007 when their two-year old son was diagnosed with spinal Ewing’s sarcoma. Their mission in founding the Pediatric Proton Foundation is a simple one: to provide education, advocacy, and assistance to families in need.
The Starlight Foundation for children and teens with cancer
Dedicated to the creation and distribution of programs that empower seriously ill children and teens to address the challenges that accompany prolonged illness – and give them back their childhoods. Programs include a private online community connecting over 30,000 kids living with chronic and serious illness. Kids can chat, email, read bulletin boards, find friends, learn about healthcare conditions, surf web sites and play games... all in a private and safe environment just for them.
SuperSibs for the siblings of children with cancer
SuperSibs! is a national nonprofit organization ensuring that siblings of children with cancer are honored, supported and recognized so they may face the future with strength, courage and hope.
Additional Resources for the Journey
- Camp Mak-A-Dream
- Camp Sunshine
- Children's Cancer Web
- Comfort Zone Camp (for grieving children)
- The Cure Our Children Foundation (Barry Sugarman's website)
Make sure to check the Financial Assistance Links!
There are organizations dedicated to providing scholarships and financial assistance for children with cancer and their families.
Recommended Resources for Young Adults
Planet Cancer is a community of young adults with cancer—the ages between "pediatric" and "geriatric." Planet Cancer focuses on this underserved cancer population. It is a place to share insights, explore fears, laugh, or even, as they put it, "give the finger to cancer with others who just plain get it." While it does not deny the dark side of cancer, Planet Cancer firmly believes that laughter and light can turn up in the strangest places.
The SAMFund is the only nonprofit organization in the country designed to help young adults (YAs) recover from the devastating financial impact of cancer treatment. They also provide an excellent list of resources for young adult cancer survivors.
A website for teens with cancer who have lots of living to do. A place where teens can get straight information on cancer and how to deal with cancer issues. Stories from real teens with cancer, and a place where teens can contact other teens through online chat. Also has sections for Moms and Dads, siblings, and friends.
The Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers were developed as a collaborative effort of the Nursing Discipline and the Late Effects Committee and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. The purpose of these guidelines is to provide recommendations for screening and management of late effects that may potentially arise as a result of therapeutic exposures used during treatment for pediatric malignancies.
Additional Resources for the Journey
- Camp Mak-A-Dream
- Group Loop (Teens Talk Cancer Online)
- I'm Too Young For This
- Livestrong Young Adult Alliance
- Stowe Weekend of Hope
- Survivors-Follow-Up Clinics
- The Ulman Cancer Fund for Young Adults
Make sure to check the Financial Assistance Links!
There are organizations dedicated to providing scholarships and financial assistance for teens and young adults.
Copyright © 2012 Liddy Shriver Sarcoma Initiative.