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 unsuscribe 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

To 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

Our Sister Foundation in Europe

SOS Desmoïde Created in 1998, this France-based organization aims at breaking 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.

FAP support groups

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.

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

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.

The link is http://www.livestrong.org/...