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Additional Resources
There are many resources available to the cancer community. Below is a list that our Patient Services team, EHE patients, and their caregivers have found to be most helpful.
EHE Rare Cancer Charity (UK)
Contact: [email protected]
EHE Rare Cancer Foundation (Australia)
Contact: [email protected]
Sarcoma Cancer Foundation of Canada
Contact: Fiona Ross, Patient/Advocate at [email protected]
EHE Italia
Contact: [email protected]
Cancer.net is the patient information website of ASCO (American Society of Clinical Oncology). It offers a wealth of information for those living with cancer and for loved ones who provide care. Their helpful tools cover a large range of topics and can help patients as they navigate their diagnosis and treatment. Go here to learn more.
CancerCare® offers comprehensive services to people living with cancer and caregivers. Services include understanding and navigating resources, counseling, support groups, educational workshops, travel and financial assistance. CancerCare(r) programming extends to pet assistance and camps and retreats for those affected by cancer. Learn more here.
Camps and retreats for those affected by cancer can be an amazing way for families and children to come together for an unforgettable experience while in a strong, nurturing, and fun environment. Many of these programs are low or no cost. Some programs offer family or adults events while others offer adventures for children (patients and family members) affected by cancer. To learn more about various camps, go to these two resources here and here.
Imerman Angels provide comfort and understanding for all cancer fighters, survivors, previvors, and caregivers through a personalized, one-on-one connection with someone who has been there. Click here to learn more.
Air Charity Network is made up of network member organizations who cover geographical service areas and coordinate volunteer flights in the continental United States, including Hawaii and Alaska. Learn more here.
Corporate Angel Network arranges free travel for cancer patients to treatment across the country using empty seats on corporate jets. Learn more here.
Miracle Flights provides no-cost commercial plane tickets to U.S.-based medical treatment facilities for families that must travel to be seen by a medical expert to effectively treat their condition. Learn more here.
Patient Airlift Services (Sky Hope) arranges free flights for patients requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially. Learn more here.
Foundation Medicine supports providers and their patients through the coverage and billing process of a genomic profiling test. This may include helping obtain prior authorizations when required, billing the patient’s health plan for the test, appealing denials with the patient’s consent, and providing financial assistance for qualifying US patients. Learn more about genomic testing here and their services here.
Sarcoma Foundation of America (SFA) provides financial assistance for travel expenses related to clinical trials access through a program called Jordan’s Dream Fund. Grants are awarded quarterly. Learn more here.
The Sarcoma Alliance offers a special grant program for sarcoma patients to seek a second opinion, which may be especially helpful for EHE patients. Grants up to $1,000 are awarded four times a year. Learn more details about the grant and apply here. They also offer a list of other organizations that offer financial support here.
The Sarcoma-Oma Foundation is a smaller organization that educates and assists Sarcoma patients in their search for treatment options. They help fund patients’ travel-related expenses when appropriate and funds Sarcoma research. Learn more about their application process here.
EHE Consensus Paper published by the community of global experts in 2020 to provide updated guidance and clinical practice information for the management of EHE. The original publication can be found here. A patient-friendly version can be found here.
National Cancer Institute (NCI) offers specialized information on Rare Cancer and Rare Vascular Tumors. Learn more here. NCI also offers COVID-19 information for those with cancer here.
National Comprehensive Cancer Network ® (NCCN®) is a nonprofit alliance of leading cancer centers devoted to patient care, research and education. The NCCN Guidelines for Patients ® for Soft Tissue Sarcoma can be found here. Other NCCN resources (found here) help patients to make informed decisions at each step of their cancer journey.
Foundation Medicine provides genomic profiling to detect alterations in tumor tissue or blood that may be driving the growth of your cancer. The tests help doctors find out if there is a targeted therapy or other therapy to best treat your cancer. Learn more about genomic profiling and Foundation Medicine here. Financial assistance is available for testing through their FoundationAccess™ program here.
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. Patients living outside the United States should also check with medical resources in their country. Find out more and search for clinical trials here. A listing of EHE-specific clinical trials can be found on our clinical trials page.
Expanded Access is a potential way for a patient to access an investigational treatment outside of clinical trials when there are no comparable or satisfactory treatments available. Expanded Access is sometimes also called “compassionate use”. Talk with your physician to explore all treatment options, and your physician can determine if Expanded Access is the only option. Learn more here.
The EHE Caregivers Facebook Group is a private group for caregivers to connect with each other in a supportive environment. It is only for caregivers and not for patients. It is not administered by The EHE Foundation. Request to join here.
The Negative Space is a nonprofit organization that shines a light on the realities of caregiving, provides direct services to caregivers, and provides education and tools to those who support caregivers. Its mission is to change the way caregivers are seen and supported. They offer 1:1 support, a podcast, support groups, social media content, and caregiver gift boxes.
The Caregiver Space provides a safe and open space where caregivers can be real about what it’s like to care for someone dealing with a serious disability or illness. They offer a community to ask questions, share experiences, get real answers, or just get things off your chest. Learn more here.
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for Americans who care for loved ones. They offer education, resources, and peer support forums here.
The Caregiver’s Handbook is a comprehensive guide with tools, resources, and in-depth solutions to some of caregiving’s toughest challenges.
The Global Genes Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts.
Feel free to send any resources that you would like us to consider to add or remove to [email protected]. Thank you for being part of our collaborative community.
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