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    prathitha Jul 13 2018 7:00 am

    European Hereditary Tumour Group 3rd Meeting 2018

    Dates: 23-25 September 2018 (Sunday to Tuesday)

    Venue: Radisson Blu Hotel, Nice, France

    On behalf of the European Hereditary Tumour Group (EHTG), we are delighted to invite you to the 2018 EHTG meeting being held in charming Nice along the Côte d’Azur. The meeting is mostly interdisciplinary and offers the unique setting of attracting scientists and clinicians from many different disciplin

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    angela anu Jul 11 2018 1:49 am

    Understanding Health Insurance

    Health insurance is a way to pay for healthcare. If the policyholder (the patient, patient’s parents, or a caregiver) pays the premiums, then the insurance company will cover many of the costs associated with your health needs.

    As a member of the rare disease community—and even if you are not—it is important to understand health insurance even though it can be a complicated and challenging subject.

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    angela anu Jul 11 2018 12:50 am

    Study identifies enhanced impact of treatment for hereditary cancer patients

    People with an inherited syndrome called familial adenomatous polyposis (FAP) have a 100% lifetime risk of developing colorectal cancer if they do not seek appropriate medical care. Recent findings published by researchers at Huntsman Cancer Institute at the University of Utah identified a promising prevention treatment for patients with FAP. A new study takes these findi

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    angela anu Jul 11 2018 12:37 am

    cats love peanut butter

    Hi there! I’m Amy and I am a web designer who lives in England with my husband and two cats. I'm currently battling advanced bowel cancer.

    I feel like I’ve coped quite well so far. My side effects have been manageable. I’ve been a bit bummed about my hair thinning but I am thankful that I consistently feel pretty good (ask me again in two months, though). I haven’t really needed my nausea pills!

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    cjpjrr3 Jul 5 2018 12:17 am

    I am having 1st of two stage surgery and will have a temporary ostomy. I would like to get some input as to what ostomy bag system people prefer, one or two piece. And what brand. I am 5'3 160 lb 48 year old woman. I had most of my colon removed in1987 due to familial polyposis. Due to size, speed of growth and that the polyps are transitioning I am having to remove remainder of colon and the lining of the rectum. I would greatly appreciate…Read more

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    Community Mgr. Jun 12 2018 3:50 pm

    Last year at this time, it was FAP Awareness Week in the state of Michigan and although it may not be official, we can still spend this week (and many others) spreading knowledge about this rare genetic disease that impacts us! Stay rare aware folks and happy faux FAP awareness week!

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    DaniCon May 13 2018 3:08 pm

    Hello everyone
    I have thought I had thyroid problems for quite a while, my thyroid appeared to show early nodules a year ago during my annual scan. More recently my hair started to come out, my eyes have been giving me trouble especially at night. They are really dry and gritty and now I think I’m going cross eyed in one eye (no laughing please!). Now my tongue is really swollen and sore, it literally feels like it is too big for my mouth. Than…Read more

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    Community Mgr. May 2 2018 12:20 pm

    Quality of Life Following Restorative Proctocolectomy for Ulcerative Colitis and Familial Adenomatous Polyposis

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    Renee May 1 2018 3:43 pm

    I was recently told that both my 18yr old son & 17 yr old daughter have polyps in their colon & would face having then removed. Their doctor has informed their great grandmother (she went to the visit bc I was hospitalized at the time) 5hat they would be able to get this "new" procedure which would replace their colons with artificial ones. Has anyone ever heard of this? We dont have another appt with this doctor bc we were referred out…Read more

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    efisher Apr 20 2018 11:28 am

    I don’t always have time to check in, or share, but am always glad this is such a caring resource to refer to...thanks for continuing to be in my corner.

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    fapvoicedemo Apr 19 2018 2:23 pm

    F.A.P. Surveillance Exams: What's involved?

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    john roberts Apr 19 2018 2:23 pm

    SCALEing F.A.P.: Impact of J-Pouch Surgeries on My Weight

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    Community Mgr. Apr 17 2018 3:02 pm

    Anyone catch FAP's mention in this insightful gem of a book?

    Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine

    Has being young and/or a woman AND sick impacted you? This FAPer's medical experience may be one of the most harrowing ones I've heard however, I appreciate that her story and FAP are advancing the young adult cancer narrative.

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    Nicolekim Apr 13 2018 12:42 am

    Ok so has anyone here with FAP been diagnosed with POTS

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    Community Mgr. Apr 3 2018 1:28 pm

    Do you care for someone with FAP? There is still 1 opportunity left to share your experience with FAP and get $60 by completing this survey: https://www.fapvoice.com/rare-questionnaire/?invited_sID=OTIzMjQ1

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    Nicolekim Mar 28 2018 7:58 pm

    Well it has come time for my 15yo daughter to have her colon removed. My son had such are hard time and with the desmoids my nerves are shot

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    Community Mgr. Mar 27 2018 3:58 pm

    Increase knowledge about the impact of FAP (and the size of your wallet)! The first 15 FAPers and 5 caregivers who are eligible and complete the "Burden of FAP" survey will receive $60 as a thank you! The survey shouldn't take more than 45 minutes and your insight will help raise awareness about the overall FAP experience. (links below)

    Patient Survey: https://www.fapvoice.com/rare-questionnaire/?invited_sID=ODUxMzg0
    Caregiver Survey: https:/Read more

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    LifesaPolyp Mar 1 2018 6:58 pm

    Anyone have any particular websites/resources regarding Turcot Syndrome that they'd recommend?

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    LifesaPolyp Feb 28 2018 10:38 pm

    Happy Rare Disease Day!

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    Erin Coolican Dickman Feb 28 2018 3:05 pm

    Hi All!,

    Well we got back Lily's results back and she has been diagnosed with AFAP. I was happier about this than a classic FAP diagnosis however her codon 2005 is on the side of the chromosome that gives her a higher chance of desmoid's. She has already been diagnosed with a Pilomatrixoma (another genetic uncommon benign skin tumor that is rarely associated with FAP). We are meeting with a Pediatric GI at UF Health/Shands. She has several F…Read more

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