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HELPFUL LINKS Caregiving & Emotional Well-being
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Information Provided by Adenoid Cystic Carcinoma Organization International
This website is meant to be a “gateway” to online information about rare cancers.
Because there are so many rare cancers, no one site can cover all aspects of all rare cancers.
This website has brought various links together that can help people:
1. find out more about their specific rare cancer;
2. research their rare cancer through Medline, PubMed, and online journals;
3. find a National Cancer Institute “comprehensive” cancer center;
4. find an e-mail support group for their rare cancer;
5. find clinical trials; and
6. check on “questionable” treatments by using Quackwatch
Please scroll down to see more.
FIND OUT ABOUT YOUR CANCER:
CLICK HERE - Over 1000 rare diseases listed at National Organization for Rare Disorders ("NORD)
CLICK HERE - to find information about your cancer at NORD
"Reports are written in understandable language..."
CLICK HERE for information from National Cancer Institute
CLICK HERE to search MedLine from MedScape
CLICK HERE to search PubMed “PubMed, a service of the National Library of Medicine, provides access to over 11 million MEDLINE citations back to the mid-1960's and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.”
CLICK HERE to access online medical dictionary and medical journals
Because your cancer is rare, the largest hospitals tend to have more experience with your type of cancer, just by sheer volume of patients seen. You local doctor may not be as familiar with your type of cancer as a doctor at a large cancer facility.
FIND A NATIONAL CANCER INSTITUTE "COMPREHENSIVE" CANCER CENTER:
“…all Clinical and Comprehensive cancer centers also provide clinical care and service for cancer patients”
CLICK HERE - National Cancer Institute Designated Cancer Centers
CLICK HERE - Description of the NCI Cancer Centers Program
FIND AN E-MAIL SUPPORT GROUP:
Because your cancer is rare, it is unlikely that you will find a local support group specifically for your cancer. If you do not find an e-mail support group through the link provided, please contact us using the Contact Box at the bottom of this page.
CLICK HERE, then fill in the name of your cancer in the Search box, and click on Search
FIND CLINICAL TRIALS: CLICK HERE - ClinicalTrials.Gov
FIND OUT ABOUT "QUESTIONABLE" CANCER TREATMENTS: CLICK HERE - Quackwatch
