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
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
For information on Drug Discount cards, Programs that help Patients find Assistance, and Pharmaceutical Company Programs see Resources for Free or Discounted Prescription MedicationsOur Sister Foundation in Europe
SOS Desmoïde in France 
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.
SOS Desmoid in Germany Building a self-help 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
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: tberk@mtsinai.on.ca,
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
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
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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. |
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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. |
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