Patient Resources

Association of Cancer Online Resources

The Association of Cancer Online Resources (ACOR) offers access to a desmoid tumor listserv (online mailing list) which provides support, information, and community to everyone affected by desmoid tumors.

The ACOR listserv is a separate entity from the DTRF and you must subscribe and unsubscribe directly with ACOR.

Subscribe to the desmoid tumor listserv.

Unsubscribe from the desmoid tumor listserv, to remove yourself, go to this link and follow the instructions.

For an explanation about ACOR listserves: http://www.acor.org/

Search the listserv archives for various topics which have been discussed on the desmoid tumor listserv in the past.

 

Free/ Discounted Travel for Clinical Trials and Medical Treatment

Angel Flight East is available to residents from Maine to Virginia and as far west as Ohio, who need to travel anywhere within the U.S., up to a maximum of 1,000 miles. However, if you do not live in this region they work with other flight networks to make the connection.This service is a way that you can visit the experts as well as travel to NIH for the desmoid clinical trial (as the first time is not covered) at no cost to you. May provide travel to patient meeting also. For eligibility and questions, call 1-215-358-1900

Corporate Angel Network is available for patients needing to travel for treatment, consultation, clinical trial or checkup. Patients can be accompanied by a family member/ companion. Financial eligibility is not required. For eligibility and questions, call (866) 328-1313.

Mercy Medical Airlift can provide either air or ground transportation services for patients. For eligibility and questions, call 888-675-1405.

Lifeline Pilots will transport patient residents living between the Rocky Mountains and the East Coast. They will travel anywhere within the U.S., up to a maximum of 1,000 miles. Flights to our Patient Meeting would be considered "compassion" flights, so not top priority, but definitely worth requesting. For eligibility and questions, call 1-800-822-7972.

Patient AirLift Services (PALS) is a 501c3 non profit that arranges FREE air transportation for individuals needing medical diagnosis or treatment. Our network of volunteer provide this service without reimbursement or compensation. There is never a charge for the services we provide.  Our primary area of geographic coverage is the entire northeast U.S. and down the eastern seaboard.

 

Financial and Medication Assistance Resources

For information on Drug Discount cards, programs that help Patients find Assistance, and Pharmaceutical Company Programs see Partnership for Prescription Assistance.

RXAssist offers a comprehensive database of patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. Patient assistance programs are run by pharmaceutical companies to provide free mediations to people who cannot afford to buy their medicine.

The Patient Advocate Foundation (PAF) Co-Pay Relieve Program (CPR) currently provides direct financial support to insuraed patients, who must financially and medically qualify ot access pharmaceutical co-payment assistance.

NeedyMeds is a nonprofit with access to a database of government programs, free clinics, prescription assistant services and government programs. The information at NeedyMeds is available anonymously and free of charge. Here is a research-based list of pharmaceutical companies that provide prescription medications free of charge to physicians whose patients may not have access to necessary medications. This list contains the names and phone number of companies that have these programs in place.

The National Human Genome Research Institute provides resources for information on financial aid for medical care and insurance premiums. (It is not authorized to provide routine medical assisance.)

Cancer Financial Assistance Coalition (CFAC) is a coalition of financial assistance organizations joining forces to help cancer patients experience better health and well-being by limiting financial challenges. For more information, visit them here. 

21st Century C.A.R.E. is a not-for-profit foundation that provides financial assistance to cancer patients in Florida and in 16 other states.  It is one of the only organizations that provide gas, food, medical supplies, temporary lodging, etc. to cancer patients in the U.S. Please see the attached brochure on support groups for patients. Also, check out more information on their services.

Patient Services evaluates an individual's financial, medical, and insurance situation to determine who is eligible for premium or co-payment assistance. They provide help for many illnesses and offer many types of financial assistance.

 
 

Foundations fighting Desmoid Tumors in Europe

SOS Desmoïde in France SOS Desmoide Created in 1998, this France-based organization seeks to break patients’ isolation, collect and circulate knowledge about the disease, and stimulate research. This means, in particular, providing information and psychological support to patients; circulating data and initiating multi-disciplinary meetings of researchers and physicians; prompting new research programmes; involving patients in the designing of programmes and the collection of tissues.

SOS Desmoid in Germany Building a self-help network for patients with Desmoid Aggressive fibromatosi. Provides one with the opportunity to network with stakeholders and interested parties. Aufbau einer Selbsthilfe für Patientinnen und Patienten mit Aggressiver Fibromatose/ Desmoid.

Sarcoma NL, the Dutch Sarcoma Foundation, focuses on Dutch speaking (ex) patients with a sarcoma or other rare tumors like Desmoïd tumor that also need to be treated by a specialist sarcoma multidisciplinary team. Therefore we focus on The Netherlands and the Flemish (Dutch) speaking part of Belgium, as well as far beyond these borders. Feel free to visit us at www.sarcoma.nl.

 

Literature

Here is a list of some booklets from the National Cancer Institute's "Support for People with Cancer" & their "Support for Caregivers" series. You can download PDF copies.

The National Comprehensive Cancer Network offers guidelines on making treatment decisions here.

 

Legal Services

The Cancer Legal Resource Center at Loyola Law School in Los Angeles, CA, provides free and confidential information and resources on cancer-related legal issues to people with cancer, their families, friends, employers, health care professionals, and others coping with cancer. The Center, a joint program of Loyola Law School and the Disability Rights Legal Center (formerly Western Law Center for Disability Rights), has a national toll free Telephone Assistance Line (866-THE-CLRC) where callers can receive information about relevant laws and resources for their particular situation. The Center provides trainings for support groups, survivors, caregivers, health care professionals, hospitals, cancer organizations, and other community groups. Email: clrc@lls.edu; Brochure / Disability Rights

 

Insurance

The State Health Insurance Assistance Program, or SHIP, is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Through federal grants directed to states, SHIPs provide free counseling and assistance via telephone and face-to-face interactive sessions, public education presentations and programs, and media activities.

 

Miscellaneous Support Programs

If you know any woman currently undergoing Chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning - 1 time per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service. This Cleaning for a Reason Organization serves the entire USA and currently has 547 partners to help these women.

Within 24 hours, the Andre Sobel River of Life Foundation helps with urgent expenses to allow single parents to stay at their child's bedside during catastrophic illness.

Visit www.CaringBridge.org

CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. Powered by generous donors, CaringBridge websites offer a personal and private space to communicate and show support, saving time and emotional energy when health matters most. Learn more about creating your own website today.

The Patient Advocate Foundation mission is to provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses. They assist patients with Medical Debt Crisis, Insurance Access Issues and Job Retention Issues.

Camp Mak-A-Dream's mission is to provide a medically supervised, cost-free Montana experience, in an intimate community setting, for children, young adults and families affected by cancer. treatment centers. The camp facility is operated by Children’s Oncology Camp Foundation and includes four modern cabins, an 11,000-square-foot lodge, an art studio, health center, maintenance building, fully accessible pool, hot tub, archery range and ropes course.

The LIVESTRONG SurvivorCare program offers counseling services, help with financial, employment or insurance issues and information about treatment options and new treatments in development. LIVESTRONG SurvivorCare is for all cancer survivors, including those diagnosed, caregivers, family and friends.

Caring Voice Coalition is dedicated to improving the lives of patients with chronic illnesses. Our organization continues to accomplish its mission by offering outreach services that provide financial, emotional and educational support.

Cancer Care provides counseling, support services, education and financial assistance. Professional oncology social workers provide free emotional and practical support for people with cancer, caregivers, loved ones and the bereaved. 

First Descents offers young adult cancer fighters and survivors (ages 18- 35) a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same. 

 

Lodging

Joe's House is a nonprofit organization providing a nation-wide online service that helps cancer patients and their families find lodging near treatment centers.

Each American Cancer Society Hope Lodge offers cancer patients and their families a free, temporary place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows Hope Lodge guests to focus on the most important thing: getting well.

Believe in Tomorrow Children's Foundation offers hospital housing for children- and their families- being treated at Johns Hopkins. The also offer respite housing for families free of charge to renew their energy and spirit throughout their child’s exhausting medical treatment.


SarcomaHelp.org from Liddy Shriver Sarcoma Initiative

The information at SarcomaHelp.org empowers patients and their loved ones to understand and deal with specific types of sarcoma and to discuss potential treatment options with their medical teams. Topics include: What sarcoma support is available in my area, What sarcoma-specific support is available online, What financial and general cancer support is available online.

The mission of the Liddy Shriver Sarcoma Initiative is to improve the quality of life for people dealing with sarcoma. The Initiative increases public awareness of sarcoma, raises money to award sarcoma research grants, and provides support and timely information to sarcoma patients, their families, and medical professionals. These efforts are achieved through collaboration with numerous individuals and organizations that share a similar vision.

More sarcoma support services here.

 

FAP Foundation

The Familial Adenomatous Polyposis Foundation is a nonprofit organization serving the hereditary colon cancer community by connecting patients and their loved ones to educational and social resources, providing financial assistance for screening, treatment, counseling, and family planning, and by promoting requisite research and health care initiatives. 


FAP Support

Canadian FAP registry- This Familial GI Cancer Registry, established in 1980, follows many Canadian families for FAP-related desmoids. Contact: Mount Sinai Hospital, Terri Burk, Tel. 416 586 4800 ext 8334,
Email:  tberk@mtsinai.on.ca,
Visit www.mtsinai.on.ca/familialgicancer

FAP articles- Genetic Health enables you to learn the latest about genetics and your health, Assess your inherited risk on-line and act to take control of your health. Access FAP articles here.

The Cancer Federation provides information, donations, education, educational materials and support groups for cancer patients, to help their families and friends.. The Federation is a not-for-profit organization that provides information, counseling, educational materials and meetings for the cancer patients, their families and friends. The federation has provided help for thousands of people over the last 25 years.

Hereditary Colorectal Cancer Takes Guts (www.hcctakesguts.org) arms patients within the hereditary colon cancer community with eduational and social resources and empowers them to confidently advocate for their health care.

 

David G. Jagelman Inherited Colorectal Cancer Registries

The mission of the David G. Jagelman Inherited Colorectal Cancer Registries is to prevent death from colorectal cancer by providing the best care to patients and families, to promote knowledge of the risk and implications of a family history of colorectal cancer and to conduct important research in areas of concern. If you or a family member have been diagnosed with Familial Adenomatous Polyposis (FAP), MYH-Associated Polyposis (MAP), Peutz-Jeghers syndrome (PJS), Juvenile polyposis (JP) Sessile Serrated Polyposis (SSP), or Hereditary Non-Polyposis Colon Cancer (HNPCC) and would like more information on the Jagelman Registries please call 216-444-6470 and ask to speak with a registry coordinator.