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Home > Site Map

      About Us
           Our History
                Initial Plan
                Groundwork
                Discovery of the Gene Associated with PXE
                Epidemiological Study
                Mutation Analysis
                Diagnostic Test
                Cellular and Molecular Studies
                PXE Research Meeting
                Clinical Study at NIH
                Conclusion
           Our People
                Board of Directors
                     A Word from the Board
                          Judy Williams
                          Claire Driscoll
                          Joe Maas
                     Patrick Terry
                     Lionel Bercovitch, MD
                     June Dawkins
                     Claire Driscoll, MS
                     Jessica Harper
                     Maria Hof
                     Joe Maas, PharmD
                     Judy Williams
                     Sharon F. Terry
                Professional Advisory Board
                Staff
                Where in the World are PXEers?
           Our Financials
                Annual Report
                     Initial Plan
                     Groundwork
                     Staffing
                     Discovery of the Gene Associated with PXE
                     Epidemiological Study
                     Mutation Analysis
                     Diagnostic Kit
                     Cellular and Molecular Studies
                     PXE Research Meeting
                     Clinical Study at NIH
                     PXE International in the Genetics Community
                     Conclusion
           Contact Us
           2010 Membership & Website Statistics
      Medical Information
           What is PXE?
           For Patients
                PXE and Cardiology
                PXE and Dentistry
                PXE and the Eye
                PXE and Gastroenterology
                PXE and Pregnancy
                PXE and the Skin
                PXE and the Vascular System
                PXE and Children
                PXE and the Primary Care Physician
                Genetic Test for PXE
                     Genetic Testing for PXE
                     How Is PXE Inherited?
                     Development of the Genetic Test
                Inheritance and PXE
                Plastic Surgery Considered
                Treatments for Retinal Bleeding
           For Health Professionals
                Angioid Streaks and PXE
                Cardiology and PXE
                Dentistry and PXE
                Dermatology and PXE
                Gastroenterology and PXE
                Pregnancy and PXE
                PXE and the Primary Care Physician
                Vascular System and PXE
           Genetics of PXE
      FAQ
           General FAQ
           Eye FAQ
                Bleeding and Vision Loss
                Eye Treatments and Procedures
                Restrictions to Activities
                Other Eye Questions
           Skin FAQ
           Cardiovascular FAQ
           Gastrointestinal FAQ
           Research FAQ
           Inheritance FAQ
           Genetics FAQ
           Women's Issues FAQ
           Insurance FAQ
           Other Health Questions FAQ
      Research
           PXE Research Meeting 2010
           Research News
           Areas of Research
                Genetics of PXE
                ABCC6 Protein
                Assay Development
                PXE Animal Models
                PXE and the Metabolism
                Clinical Manifestations
                Epidemiology of PXE
                Clinical Trials
           Peer-Reviewed Publications about PXE
                2008
                2007
                2006
                2005
                2004
                2003
                2002
                2001
                2000
                1999-1992
           PXE Research Conference Summaries
                2009: Satellite Symposium on PXE
                2004: PXE Research Conference
                1997: International Centennial Meeting
                1992: Consensus Conference on PXE
           PXE International Blood and Tissue Bank
           PXE Mutation Database
           Profiles of PXE Researchers
                Lionel Bercovitch
                Nicolas Chassaing
                Anne De Paepe
                Michael Dean
                Christian Götting
                Tim Hefferon
                Doris Hendig
                Olivier Le Saux
                Ellen Pfendner
                Michele Ramsay
                Ivonne Pasquali-Ronchetti
                Jouni Uitto
                Olivier Vanakker
                András Váradi
           How Can PXEers Participate in Research?
           Additional Information
      Vision
      News
           MemberGram Newsletter
                Past Issues
                     Spring 2010
                     Summer 2009
                     Fall 2008
                     Summer 2008
                     Fall 2007
                     Summer 2006
                     Spring 2006
                     Spring 2005
                     Spring 2004
                     Spring/Summer 2003
                     Fall 2002
                     Spring 2002
                     Spring/Summer/Fall 2001
                     Winter 2000
                     Spring 2000
                     Winter 1999/2000
                     Autumn 1999
                     Spring/Summer 1999
                     Fall/Winter 1998
                     Summer 1998
                     Spring 1998
                     Winter 1997
                     Autumn 1997
                     Summer 1997
                     Spring 1997
                     Fall/Winter 1996
                     Summer 1996
                     February 1996
                Articles by Topic
                     Vision
                     Genetics
                     PXE Research
                          Clinical Manifestations of PXE
                          Clinical Trials
                          Epidemiology of PXE
                          PXE International Blood and Tissue Bank
                          Research Meetings
                     Personal Stories
                     How You Helped
                     Legislative
                     PXE International History
           eNewsletters
                August 2010
                July 2010
                March 2010
                February 2010
                December 2009
                November 2009
                August 2009
                May 2009
                February 2009
                2008 eNewsletters
           News Articles
           Email Listservs
           Harper's Corner
                Cape Cod in August, Bethesda in September
                Cuss Free Week
                Timeless
                The Talking Scale
                Men, Gas and Measuring Cups
                Queen for a Day
                Harper's Corner
                The Elephant In My Room
           PXE Vision
                The Top 10 PXE Myths
                A Funny Thing Happened on the Way to the Retinologist
                A PXEer's Success Story
                Two Paths
                Own Your Disease
                What We Want—and Need: Gifts for PXEers
                Are You Disabled?
                What I Miss Most (about not seeing)
                Getting Going
                Discovery
                Introduction
           New Section
      Events
           2010 Biennial Conference
           Webinar Schedule
                Webinar FAQ
                Past Webinars
           Regional PXE Meetings
                Toronto Regional PXE Meeting
           Other Meetings
                PXE Italia Meeting report
                W. Australia Support Group Meeting
                2008 Biennial Conference
           Honorees at Past Conferences
      Support
           Support Group Offices
                U. S. Offices
                International Offices
           Support Office Guidelines
           PXE Biographies
                One Woman's Journey
                Amy
                Jan
                Nancy
                Wendy
                Donna
                Gordon
                Elmer
      Links
           More About PXE
           Vision
           Skin
           Genetic Testing
           Clinical Trials
           Disability and Patient Resources
           General Healthcare
           Products - Proceeds to Support PXE International
      Get Involved
           Donate
                Giving options
                15th Anniversary Challenge
                Donate Your Clinical Information
                Honor and Memorial Gifts
                2009 Annual Appeal
                2009 Honor Roll of Donors
                Vehicle Donation
                Combined Federal Campaign
                Stock Donation
           Fundraising
                PXE Fundraising 101
                Pennies for PXE
                Firstgiving
                Dollar Bill Fundraiser
                iGive
                GoodSearch
                eBay Giving Works and MissionFish
                Jessica Harper Children's Books and CDs
           Register


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