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/about/acorlists.html

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

Resources for Free or Discounted Prescription Medications

For information on Drug Discount cards, Programs that help Patients find Assistance, and Pharmaceutical Company Programs see Resources for Free or Discounted Prescription Medications

Foundations fighting Desmoid Tumors in Europe

SOS Desmoïde in France SOS Desmoïde in France 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.

FAP support groups

FAP Support Group.org. Some people with desmoid tumors also have a genetic condition resulting in a disease called Familial Adenomatous Polyposis (FAP). This links to a FAP support group and more information regarding this disease. http://www.fapsupportgroup.org/Links/links.htm

United States FAP registry at the Cleveland Clinic. 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, by promoting knowledge of the risks and implications of a family history of colorectal cancer, and by conducting important research in areas of concerns.

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: This email address is being protected from spambots. You need JavaScript enabled to view it. ,
Visit www.mtsinai.on.ca/familialgicancer

FAP articles at Genetic Health. 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.

FAP/Gardner's syndrome (Yahoo Health group). FAP/Gardner's syndrome is about genetics and disease. This group helps us to understand that genetics does not always mean inherited, and you don't have to be so scared and alone. We need to educate as many people as possible. We need to educate ourselves and our families. We need to educate insurance companies. We need to educate pediatricians, dentists, dermatologists, interns and gastroenterologists. Treatment for FAP/GS is not only with surgery and drugs, but with emotions. We need to know the plan of attack. We need to know the possibilities and probabilities so that we can be armed with the knowledge to go for multiple opinions when necessary ... so we can mix our own combination of emotion and fact to decide yes or no to a particular drug or surgery ... so we can decide whether or not to have children.

A US based internet club for kids with FAP (Yahoo Health group).
Founded in 1999 a place for our kids w/GS and their friends to be able to come and talk with each other

Kids FAP at the John Hopkins Gastroenterology & Hepatology Resource Centre
This section is dedicated to kids and teenagers who have a genetic condition called FAP. FAP, or its full name, familial adenomatous polyposis, is a condition in which polyps (pronounced pol'ips) form in the digestive tract and are inherited. Polyps are abnormal, mushroom-like growths that form on the inside of the digestive tract.

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.

21st Century C.A.R.E.

This organization 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 our services.

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.

LIVESTRONG SurvivorCare

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.

Desmoid Tumors by Dr. Charisse Litchman

This book is the first manuscript dedicated entirely to Desmoid Tumors. Written by prominent clinicians, researchers and advocacy group experts, patients and professionals alike will find this to be a comprehensive review. Clinical presentation, imaging guidelines and treatment paradigms are highlighted. Both the sporadic and heredity forms (Familial Adenomatous Polyposis) will be discussed.

A thorough discussion on the unique issues in children with DT is included. A portion of the book will address the role of the APC gene, the ß-catenin protein and the role of mutations in the genesis of DT. Emerging cutting edge research techniques will be revealed.

Also included is a thoughtful discussion on the controversial labelling of Desmoid Tumors as benign and the consequences of such a designation. The role of advocacy groups in supporting research and in promoting awareness of rare diseases such as DT will be outlined. This book will serve as basis to prepare clinicians, researchers and patients to embark on the quest for a cure for Desmoid Tumors.

Cancer Legal Research Center

Loyola Law School / Los Angeles, CA

The Cancer Legal Resource Center 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: This email address is being protected from spambots. You need JavaScript enabled to view it.

Brochure / Disability Rights

Joe's House

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.

Camp Mak-A-Dream

One week can change a lifetime.
This is the core belief at Camp Mak-A-Dream. Their 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.

Camp Mak-A-Dream is operated by Children’s Oncology Camp Foundation. The camp facility 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.

Hope Lodge

Facing cancer is hard. Having to travel out of town for treatment can make it even harder. Yet the American Cancer Society has a place where cancer patients and their families can find help and hope when home is far away - an American Cancer Society Hope Lodge.

Each 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.

Cleaning for a Reason

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.

Patient AirLift Services

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.

For more info visit our website www.palservices.org

Mercy Medical Airlift

Dedicated to helping those in need of Air Medical Transportation.

For more info visit our website www.mercymedical.org

CaringBridge

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.

For more info visit www.CaringBridge.org

Booklets from National Cancer Institute

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.

Biological Therapy (12-pages)
Chemotherapy & You (68-pages)
Coping with Advanced Cancer (64-pages)
Eating Hints Before, During & After Cancer Treatments (76-pages)
Pain Control (52-pages)
Radiation Therapy & You (68-pages)
Taking Time (76-pages)
Thinking about Complementary & Alternative Medicine (13-pages)
When Cancer Returns (48-pages)
When Someone You Love has Advanced Cancer (64-pages)

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.

Patient Advocate Foundation

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
Job Retention Issues