They are arranging the Genetic screening for my son, and help to coordinate my care, and also to see if there is any sign in other family members. - Daniel Stapely
I have been very fortunate to qualify for numerous clinical trials thanks to signing up with the Hereditary Colon Cancer Registries. Had I not signed up with the registries, I wouldn't have known about the clinical trials. - Betty Starr
Yes, my entire family qualified for free genetic testing after my father, sister and I were tested positive. - Linda Warner
Newly registered - so here in the beginning I have found it valuable to see what research is being done, receiving quarterly newsletters, articles, information etc.. I am a strong believer in knowledge is power. Whatever I can do to help the cause I will do. I will control how FAP affects me - it will not control me! - Michelle Sutter
Contacted about existing, and upcoming studies, that I might qualify for. - Kelly Livingston
They send us a newsletter of thing going on concerning cancer, tests, and other important things to know - Melanie Hirschi
I received specific information about high risk of thyroid nodules, cancer associated with MAP from Cleveland Clinic's registry. I now get regular thyroid [ultrasound]. I have peace of mind by knowing their are understanding, well-informed experts available to me through the registry to share with me information that can help me manage my disease. - Frank Rider
Met others in my area and helped talk to “newbies”. - Charlie Henricks
I certainly felt good about sharing symptoms and knowing what others had to offer. I think the connections from person to person need to be much broader and more open as there are really so few with this condition. - Sandra Redlands
Question 13: How have you benefited from being a part of a patient registry?
Factoid: The Collaborative Group of the Americas on Inherited Colorectal Cancer hosts a list of registries. Look to see if there is one near you!
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