tag:blogger.com,1999:blog-84028863588159210882024-02-08T04:11:33.786-08:00Juvenile Polyposis Syndrome NewsUnknownnoreply@blogger.comBlogger1125tag:blogger.com,1999:blog-8402886358815921088.post-77260687104566013322015-07-04T10:33:00.002-07:002015-07-04T10:33:46.538-07:00Juvenile Polyposis Syndrome News<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Calibri;">Juvenile Polyposis Syndrome News</span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">July 2015<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">For many years I've moderated an online support group for people affected by two</span><span style="font-family: Calibri;"> different rare genetic disorders Peutz-Jeghers Syndrome (PJS)
& Juvenile Polyposis Syndrome (JPS). </span></div>
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<span style="font-family: Calibri;">As part of that work, I've also published a newsletter and maintained the PJS News blog. </span><a href="http://peutz-jeghersnews.blogspot.com/">http://peutz-jeghersnews.blogspot.com</a></div>
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<span style="font-family: Calibri;">I've just updated the following newsletter today and would like it to be available to those interested in JPS too, so I created this new blog. </span></div>
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<span style="font-family: Calibri;">Both disorders lead to gastrointestinal
polyps and increased risk of cancer, but they are different disorders, so please
look before clicking on a link.</span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Warmest healing
wishes,<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Stephanie Sugars<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="mailto:pj4steph@aol.com"><span style="mso-bidi-font-family: Arial;">pj4steph@aol.com</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">*****<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">INFORMATION AND
NEWS <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">All journal
articles below are available free full text. For more titles and abstracts,
please search PubMed <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pubmed"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/pubmed</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* The
Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="https://www.smartpatients.com/communities/peutz-jeghers-syndrome">https://www.smartpatients.com/communities/peutz-jeghers-syndrome</a><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Please join us
there by clicking on the link and following instructions to join. If you aren’t
ready to join, please bookmark the website for future use.<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Peutz-Jeghers News
blog by Stephanie Sugars<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://peutz-jeghersnews.blogspot.com/"><span style="mso-bidi-font-family: Arial;">http://peutz-jeghersnews.blogspot.com/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2015
Peutz-Jeghers Syndrome Meet & Greets are being planned for both Boston and
Houston. <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2015
Introductory article to PJS and JPS<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4381153/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4381153/</a><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2015 eMedicine
article on PJS<o:p></o:p></span></div>
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<span style="color: black; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><a href="http://emedicine.medscape.com/article/182006-overview">http://emedicine.medscape.com/article/182006-overview</a><o:p></o:p></span></div>
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<span style="color: black; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;">* 2015 Genetic counseling practice
guidelines that include PJS and JPS<o:p></o:p></span></div>
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<span style="color: black; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-fareast-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><a href="https://www.acmg.net/docs/gim2014147a.pdf">https://www.acmg.net/docs/gim2014147a.pdf</a>
<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014
Storytelling event – I tell of PJS and its affect on my life with breast cancer
and relationship with death<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="https://www.youtube.com/watch?v=tnpA4CbmJxQ"><span style="mso-bidi-font-family: Arial;">https://www.youtube.com/watch?v=tnpA4CbmJxQ</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014 Free online
40-minute radio show about PJS<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.blogtalkradio.com/powerful-patient/2014/07/10/stephanie-sugars-and-the-pjs-community"><span style="mso-bidi-font-family: Arial;">http://www.blogtalkradio.com/powerful-patient/2014/07/10/stephanie-sugars-and-the-pjs-community</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"> <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014
Introductory article PJS and JPS and similar polyposis syndromes<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4112971/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4112971/</a><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014 Juvenile
Polyposis syndrome entry at GeneReviews<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/books/NBK1469/"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/books/NBK1469/</span></a></span><span class="MsoHyperlink"><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014 Juvenile
Polyposis syndrome articles<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4107262/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4107262/</a><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125531/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125531/</a><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014 Cancer.Net
PJS entry<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.cancer.net/cancer-types/peutz-jeghers-syndrome"><span style="mso-bidi-font-family: Arial;">http://www.cancer.net/cancer-types/peutz-jeghers-syndrome</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">and 2014 JPS entry<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.cancer.net/cancer-types/juvenile-polyposis-syndrome"><span style="mso-bidi-font-family: Arial;">http://www.cancer.net/cancer-types/juvenile-polyposis-syndrome</span></a></span><u><span style="color: blue; font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></u></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014 Update on
Imaging in PJS<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4138465/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4138465/</a>
<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014 Intro to
PJS for affected and their loved ones from St. Mark’s Hospital Polyposis
Registry in London<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.stmarkshospital.nhs.uk/wp-content/uploads/2014/07/Peutz-Jeghers-Syndrome-PJS.pdf">http://www.stmarkshospital.nhs.uk/wp-content/uploads/2014/07/Peutz-Jeghers-Syndrome-PJS.pdf</a>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2014 Intro to
JPS for affected and their loved ones from St. Mark’s Hospital Polyposis
Registry in London<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.stmarkshospital.nhs.uk/wp-content/uploads/2014/07/Juvenile-Polyposis-Syndrome-JPS.pdf">http://www.stmarkshospital.nhs.uk/wp-content/uploads/2014/07/Juvenile-Polyposis-Syndrome-JPS.pdf</a>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2013 GeneReviews
PJS entry<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/books/NBK1266/"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/books/NBK1266/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><span style="mso-spacerun: yes;"> </span>Directories for genetic testing laboratories
and clinics can be found at: </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.genetests.org/"><span style="mso-bidi-font-family: Arial;">http://www.genetests.org/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2013 Genetics
Home Reference<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Peutz-Jeghers
syndrome entry <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://ghr.nlm.nih.gov/condition/peutz-jeghers-syndrome"><span style="mso-bidi-font-family: Arial;">http://ghr.nlm.nih.gov/condition/peutz-jeghers-syndrome</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2012 Juvenile
polyposis syndrome: a study of genotype, phenotype, and long-term outcome<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">free slide presentation<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.insight-group.org/pdf/8-5.pdf"><span style="mso-bidi-font-family: Arial;">http://www.insight-group.org/pdf/8-5.pdf</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2012 PJS and
family planning: the attitude towards prenatal genetic testing and
pre-implantation genetic diagnosis<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3260925/"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3260925/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* The Summer 2011
issue of Familial Cancer journal focuses on <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Peutz-Jeghers
syndrome. The issue includes an article by me, <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Peutz-Jeghers
syndrome: a patient’s view. It can be purchased for <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">$34.95 at <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.springerlink.com/openurl.asp?genre=article&id=doi:10.1007/s10689-011-9453-y"><span style="mso-bidi-font-family: Arial;">http://www.springerlink.com/openurl.asp?genre=article&id=doi:10.1007/s10689-011-9453-y</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"> <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Or read in an
unformatted version at <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://peutz-jeghersnews.blogspot.com/2011/06/my-article-in-familial-cancers-summer.html"><span style="mso-bidi-font-family: Arial;">http://peutz-jeghersnews.blogspot.com/2011/06/my-article-in-familial-cancers-summer.html</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2011 The third
Peutz-Jeghers Syndrome Meet & Greet was held in Denver, Colorado. For a
copy of the DVD, please contact Heidi at </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="mailto:neverseenthat10@yahoo.com"><span style="mso-bidi-font-family: Arial;">neverseenthat10@yahoo.com</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2011 article
about JPS - Juvenile polyposis syndrome<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.wjgnet.com/1007-9327/full/v17/i44/4839.htm"><span style="mso-bidi-font-family: Arial;">http://www.wjgnet.com/1007-9327/full/v17/i44/4839.htm</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2010 radio show
about the PJS Online Support Group<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.pushinglimits.i941.net/?s=sugars"><span style="mso-bidi-font-family: Arial;">http://www.pushinglimits.i941.net/?s=sugars</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">(click on Among
Ourselves - PJS begins around minute 15)<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2010 article
from 2007 conference of European PJS specialists<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Peutz–Jeghers
syndrome: a systematic review and recommendations for Management<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">free full text<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://diposit.ub.edu/dspace/bitstream/2445/18638/1/578379.pdf"><span style="mso-bidi-font-family: Arial;">http://diposit.ub.edu/dspace/bitstream/2445/18638/1/578379.pdf</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">(note: this link may
not work, if not please copy and paste the URL into your browser to reach the
article.)<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2010 free full
text article includes PJS and Juvenile Polyposis <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Syndrome -
Hereditary hamartomatous polyposis syndromes: understanding the disease risks
as children reach adulthood. by M. Manfredi <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886463/"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886463/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2010 report on
Genetic mosaicism in PJS people. This is something patients and family members
should discuss with genetic counselors…but they don't have the information yet.
<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://peutz-jeghersnews.blogspot.com/2010/03/mosaicism-what-is-it-whos-affected-why.html"><span style="mso-bidi-font-family: Arial;">http://peutz-jeghersnews.blogspot.com/2010/03/mosaicism-what-is-it-whos-affected-why.html</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">*<span style="mso-spacerun: yes;"> </span>2010 report – How to have a PJS-free baby<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Posted at </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://peutz-jeghersnews.blogspot.com/2010/01/how-to-have-pjs-free-baby.html"><span style="mso-bidi-font-family: Arial;">http://peutz-jeghersnews.blogspot.com/2010/01/how-to-have-pjs-free-baby.html</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"> <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2009 Implications
of Peutz-Jeghers Syndrome in Children and Adolescents<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/books/NBK26374/">http://www.ncbi.nlm.nih.gov/books/NBK26374/</a>
<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2009 Juvenile
Polyposis entry from Cancer Syndromes textbook <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/books/NBK51310/"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/books/NBK51310/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2009 Juvenile
Polyposis syndrome entry from Genetics Home Reference<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://ghr.nlm.nih.gov/condition/juvenile-polyposis-syndrome"><span style="mso-bidi-font-family: Arial;">http://ghr.nlm.nih.gov/condition/juvenile-polyposis-syndrome</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2009 PJS in the
news. This story is about mice, not people. And no, these drugs aren't
currently available to PJS human patients, though there was a small trial of
them in Utah. And the suggested FDG-PET scans for screening have several
drawbacks including accuracy, expense & radiation exposure. Still, it's
interesting that mouse PJS polyps show increased glucose metabolism. The PJS
gene LKB1 affects both metabolism and cancer risk. Press release: <span style="mso-spacerun: yes;"> </span></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.eurekalert.org/pub_releases/2009-06/si-hc061209.php"><span style="mso-bidi-font-family: Arial;">http://www.eurekalert.org/pub_releases/2009-06/si-hc061209.php</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"> <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Free full text
article: </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.pnas.org/content/106/27/11137.long"><span style="mso-bidi-font-family: Arial;">http://www.pnas.org/content/106/27/11137.long</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2008 50+ page PJS
entry from Cancer Syndromes textbook<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">appropriate for
patients, family, doctors and genetic counselors at <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/books/NBK1826/">http://www.ncbi.nlm.nih.gov/books/NBK1826/</a><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2006 Frequency
and Spectrum of Cancers in the Peutz-Jeghers Syndrome. <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://clincancerres.aacrjournals.org/cgi/content/full/12/10/3209"><span style="mso-bidi-font-family: Arial;">http://clincancerres.aacrjournals.org/cgi/content/full/12/10/3209</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* 2006
Peutz-Jeghers Syndrome and Management Recommendations. This article from Johns
Hopkins includes suggested screening for PJS people & at-risk family
members. Click on full-text tab for free full text.<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.cghjournal.org/article/PIIS1542356505010931/abstract?source=aemf"><span style="mso-bidi-font-family: Arial;">http://www.cghjournal.org/article/PIIS1542356505010931/abstract?source=aemf</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"> <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">TREATMENT OPTIONS<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Learn more about
the PillCam capsule endoscopy for small bowel imaging and find a physician in
your region at </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.givenimaging.com/"><span style="mso-bidi-font-family: Arial;">www.givenimaging.com</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Enteroscopy
allows the entire small bowel to be scoped and replaces major and endoscopic
surgery in some PJS patients. Interventional balloon enteroscopy at </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pubmed/22586550"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/pubmed/22586550</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Learn more about
double balloon enteroscopy, a new surgical method and get referrals to doctors
who use it at </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.fujinonendoscopy.com/"><span style="mso-bidi-font-family: Arial;">www.fujinonendoscopy.com</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Learn more about
its use in adults at <o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1618735/"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1618735/</span></a></span><span class="MsoHyperlink"><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"> </span></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">and in children at
</span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799917/"><span style="mso-bidi-font-family: Arial;">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799917/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Olympus has technologies
for reaching and visualizing the small bowel including endocapsule, spiral
enteroscopy and single balloon enteroscopy. </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.olympusamerica.com/msg_section/index.asp"><span style="mso-bidi-font-family: Arial;">http://www.olympusamerica.com/msg_section/index.asp</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">GENETIC TESTING<o:p></o:p></span></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* The genetic test
method, MLPA, has increased the accuracy of genetic testing for PJS. Those with
previously negative or inconclusive test results may wish to be retested.
Clinic and laboratory directories for PJS </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/gtr/conditions/C0031269/">http://www.ncbi.nlm.nih.gov/gtr/conditions/C0031269/</a><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;">* </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Clinic and laboratory directories for JPS<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/gtr/conditions/C0345893/">http://www.ncbi.nlm.nih.gov/gtr/conditions/C0345893/</a><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">And for JPHT <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Juvenile
polyposis/hereditary hemorrhagic telangiectasia syndrome<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="http://www.ncbi.nlm.nih.gov/gtr/conditions/C1832942/">http://www.ncbi.nlm.nih.gov/gtr/conditions/C1832942/</a>
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* PJS genetic testing
is available (no travel necessary) through Professor <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Rodney Scott,
Division of Genetics, Hunter Area Pathology Services, <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">John Hunter
Hospital, Lookout Road, New Lambton, NSW 2305 Australia. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Check with Dr.
Scott for cost </span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="mailto:Rodney.Scott@newcastle.edu.au"><span style="mso-bidi-font-family: Arial;">Rodney.Scott@newcastle.edu.au</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">TRIALS AND STUDIES
SEEKING PARTICIPANTS<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Pancreatic
cancer screening studies open to PJS participants <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Baltimore,
Maryland (ask about study sites in Massachusetts, Ohio, and Pennsylvania)<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="https://clinicaltrials.gov/ct2/show/NCT02000089">https://clinicaltrials.gov/ct2/show/NCT02000089</a><u><span style="color: blue;"><o:p></o:p></span></u></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">White Plains, NY<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="https://clinicaltrials.gov/ct2/show/NCT02206360">https://clinicaltrials.gov/ct2/show/NCT02206360</a><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Arkansas<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="https://clinicaltrials.gov/ct2/show/NCT02309632">https://clinicaltrials.gov/ct2/show/NCT02309632</a>
<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Tampa Florida also
has a pancreatic cancer screening study <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://clinicaltrials.gov/ct2/show/NCT01662609"><span style="mso-bidi-font-family: Arial;">http://clinicaltrials.gov/ct2/show/NCT01662609</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Dr. Stratakis,
an endocrinologist with the NIH, continues to study PJS patients in Bethesda,
MD, USA <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://clinicaltrials.gov/ct/show/NCT00001452"><span style="mso-bidi-font-family: Arial;">http://clinicaltrials.gov/ct/show/NCT00001452</span></a></span><span class="MsoHyperlink"><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Study of people
with PJS and JPS in France<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="https://clinicaltrials.gov/ct2/show/NCT01987518"><span style="mso-bidi-font-family: Arial;">https://clinicaltrials.gov/ct2/show/NCT01987518</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">ADDITIONAL
RESOURCES<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* European
laboratories, research studies and information<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.orpha.net/"><span style="mso-bidi-font-family: Arial;">http://www.orpha.net/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">* Many free,
full-text, old articles on PJS are available at<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.jeghers.com/%23!peutz-jeghers-syndrome/c5dz">http://www.jeghers.com/#!peutz-jeghers-syndrome/c5dz</a>
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">*************<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">ONLINE SUPPORT
GROUPS - INHERITED CANCER SYNDROMES<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="tab-stops: 396.65pt;">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support
Group <span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">The affected,
family, friends, medical professionals and researchers are welcome to join the
free online support group<span style="mso-spacerun: yes;"> </span></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="https://www.smartpatients.com/communities/peutz-jeghers-syndrome">https://www.smartpatients.com/communities/peutz-jeghers-syndrome</a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Peutz-Jeghers
Syndrome Support – Facebook Group<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Now a closed group<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="https://www.facebook.com/groups/31398264512/"><span style="mso-bidi-font-family: Arial;">https://www.facebook.com/groups/31398264512/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Sindrome de
Peutz-Jeghers en Espanol<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><a href="mailto:sindromedepeutzjeghers@googlegroups.com">sindromedepeutzjeghers@googlegroups.com</a>
<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://groups.google.es/group/sindromedepeutzjeghers?hl=es"><span style="mso-bidi-font-family: Arial;">http://groups.google.es/group/sindromedepeutzjeghers?hl=es</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Peutz-Jeghers
syndrome in China<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="mailto:subberry@gmail.com"><span style="mso-bidi-font-family: Arial;">subberry@gmail.com</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="tab-stops: 371.35pt;">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Hereditary Colon Cancer Takes Guts<span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Familial
Adenomatous Polyposis Foundation<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.hcctakesguts.org/"><span style="mso-bidi-font-family: Arial;">http://www.hcctakesguts.org/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">FAP/Gardner
syndrome<o:p></o:p></span></div>
<div class="MsoNormal" style="tab-stops: 214.65pt;">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://listserv.acor.org/archives/fap-gs.html"><span style="mso-bidi-font-family: Arial;">http://listserv.acor.org/archives/fap-gs.html</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Lynch Syndrome or HNPCC<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://health.groups.yahoo.com/group/HNPCC/"><span style="mso-bidi-font-family: Arial;">http://health.groups.yahoo.com/group/HNPCC/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://www.lynchcancers.com/"><span style="mso-bidi-font-family: Arial;">http://www.lynchcancers.com/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Li-Fraumeni<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://listserv.acor.org/archives/li-fraumeni.html"><span style="mso-bidi-font-family: Arial;">http://listserv.acor.org/archives/li-fraumeni.html</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Cowden/PTEN<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="http://health.groups.yahoo.com/group/cowdensyndrome/"><span style="mso-bidi-font-family: Arial;">http://health.groups.yahoo.com/group/cowdensyndrome/</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;">Stephanie Sugars<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-hansi-theme-font: major-latin;"><a href="mailto:pj4steph@aol.com"><span style="mso-bidi-font-family: Arial;">pj4steph@aol.com</span></a></span><span style="font-family: Calibri; mso-ascii-theme-font: major-latin; mso-bidi-font-family: Arial; mso-hansi-theme-font: major-latin;"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
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